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  1. Learning of your new diagnosis can be overwhelming under any circumstances. Learning of your new diagnosis that no one has heard of, let alone understands, can trigger complex feelings and reactions. If you are reading this article, you have likely been diagnosed with dysautonomia recently or many years ago, or know someone who has. Prior to your diagnosis, you may have spent years searching for explanations for your symptoms. And during that search, you could have been told those symptoms are "all in your head" or "you're too young to be that sick"... the list goes on. FINALLY getting a diagnosis could have surfaced a wide array of emotions, among them relief and validation to finally have a name for your experiences--no, it was not all in your head. Then, as you went home armed with your diagnosis, and continued living with the symptoms of your life-altering dysautonomia, your relief and validation were likely accompanied by feelings of loss, anger, joy, empowerment, etc. Whatever you felt and still feel is okay, and while everyone's reactions are different, this article is meant to address some of the major aspects of adjusting to life with dysautonomia. Let Yourself Feel There is no right way to feel about your diagnosis, just like there is no right way to adjust to the change of living with a life-altering condition. Try to practice accepting your emotions, whatever they may be. I have always seen myself as a go-getter. If there was an obstacle in the way of achieving my goals I found ways to bulldoze over it. My sense of identity was very much defined by my ability to achieve - achieve my goals, achieve career progress, achieve success. Then, my story took a turn that is probably familiar to many of you - I developed mysterious and debilitating symptoms after an infection. I had to put all of my dreams on hold, and I spent years in and out of various medical establishments to try to figure out what the heck was going on with me. I was told I was crazy, dramatic, had a low pain tolerance, and I was just fearful of growing up until one doctor listened and diagnosed me with a condition that I had never heard of, dysautonomia. Armed with a diagnosis, I decided I would attack this new condition head on and be back to my old self - finally. The story didn't go that way, and that triggered feelings of sadness and hopelessness. Then, I got angry at myself for getting down. In my mind, feeling sad and sorry for myself meant that all those doctors who said I was dramatic or crazy were right. Looking back, I realize I was far too hard on myself. And, honestly, some days I still am. But now I try to keep an awareness that these feelings are expected. In fact, it would be a bit alarming if I didn't feel them sometimes. After some research, I felt validated to know that it is normal to feel a TON of emotions after a new diagnosis - even ones that seem to contradict each other, such as feeling a sense of acceptance one day and anger the next. You may also go through periods of grief, sadness, bargaining, and denial (1). It may also be helpful to realize how the stigma of conditions can impact our reactions to them. For example, people diagnosed with diabetes report feeling guilt and shame (1), while people with dysautonomia may question the legitimacy of their condition even after a diagnosis. It is also important to remember that it is okay to seek mental health support. Our articles, You're Not Alone: Understanding Depression and Chronic Illness, and I Can't "Just Relax": Understanding Anxiety and Chronic Illness, may provide some insight. While dysautonomia is not caused by anxiety or depression, both of these conditions can develop as a result of dealing with the condition. One woman reported that she started having anxiety around having a fainting episode in public. This would prevent her from engaging in loved activities, and it created some confusion regarding what symptoms were caused by POTS and what symptoms were exacerbated by anxiety. Talking with a therapist helped her regain a sense of control (2). Understanding Acceptance Acceptance can be a fueled word, and we all interpret it a little differently. One important point is that accepting your diagnosis does not mean that you are giving up on any other aspect of your life. While it may take time to accept your new diagnosis, many experts agree that denial does not usually have long-term success (1). You will likely go through periods of denial as you adjust to living with a chronic illness. That is okay. However, living in denial for a long period of time can lead to worse psychological well-being than facing your illness (1). While acceptance can operate differently in each person's life, here are a few ways you can practice cultivating it: One person with POTS said that acceptance meant acknowledging her body could no longer do the things it did before. She worked on this by taking each day as it came, and allowing herself the time she needed to mentally adjust to how her body functioned on a day-to-day basis (2). While this may seem like giving up, she actually took on the very conscious and active task of recognizing her body for what it was, and changing the way she thought about it. Another activity could be finding ways to challenge yourself appropriately, given your new normal. Walking down the driveway to collect the mail may be something the old you took for granted. It may, however, be a very appropriate challenge for your current body (2). Challenging yourself in seemingly small ways (and giving yourself credit for facing these challenges!) can add up to feeling accomplished and empowered within your current reality. Really, really try not to compare yourself to others, even others with dysautonomia (3). Dysautonomia presents so differently in each person, and every person has their own, unique set of circumstances that challenge them. If you are in a mindset of comparing yourself to others, you will always find someone who seems to be doing better than you. In my early years of living with dysautonomia, I always felt like I was falling behind in career and life goals when I compared myself to peers my age. I was also battling a life-altering illness, but I never gave myself credit for that. Please don't make the mistake that I made. Claim your worst-case scenario. It is natural to start to think about all the things that could go wrong with your health and circumstances when a lot of things have gone wrong. Next time you begin to imagine the worst-case scenario, start to think about all the things that will still be okay even if that scenario happens (3). Above all else, be kind to yourself. Think about a person you care about deeply. Would you be as hard on them as you are on yourself if they had a severe health condition (3)? Being kind to yourself is ending each day with the reminder that you did the best you could that day with what you had. Even if you rested all day you gave your body the time and permission it needed to care for itself. We will all experience moments of anger, denial, sadness, and anxiety, so be kind to yourself when these emotions arise. Your self-compassion will help you shift out of these moments more quickly and refocus on all of your wins, no matter how small. Learn New Ways of Being Dysautonomia may have dramatically altered your life, and you might need to think about how you can adjust your everyday activities to fit your new normal. 1. Learn: While it can be easy to get lost in the Googlesphere, a healthy pursuit of knowledge about your condition can be beneficial to advocate for yourself in medical appointments because your research will encourage you to ask more pointed questions. It will also help you recognize your specific symptom triggers (2). We recommend keeping a running list of questions, perhaps on your phone, so that they are ready to ask them when you meet with your doctors (1). Just be sure to always seek understanding from reputable and trusted sources. 2. Track: While learning about your condition from outside sources is helpful, it is also critical to understand how it manifests in you. It can be tough to remember all your symptoms, especially if brain fog is one of them, so a symptom diary can be a good way to track your day-to-day illness experiences (3). This was one of the most valuable activities I did when I was first diagnosed. It helped me realize that my symptoms dramatically exacerbated when I got poor sleep, and I could demonstrate clear trends to my doctors. 3. Manage: You will not be able to control your health entirely. If you could, you would probably know exactly what to do to cure yourself of dysautonomia. Nonetheless, you may discover there are small management techniques that work for you (sort-of, sometimes) to keep your symptoms as minimal as possible. These management techniques could be identifying the type of nutrition that makes your body feel its best, taking your medications as prescribed, or focusing your time and energy on people who support you and your health (1). It's also important to recognize that individual management techniques for dysautonomia don't always have dramatic impact. Increasing the salt and fluids in your diet may help a little, just like changing your sleeping position or wearing compression socks. Altogether, though, they may take the edge off your symptoms so that you can get you through the day. Always remember to count the small wins (3). 4. Modify: I would love to say that with determination you can do all the things you could do before you were sick. However, that over-simplified message can push people into spaces of denial, and even cause them to harm their bodies. What I will say is that what you can or can't do is individual to you, and I do believe there are ways to modify most activities so that you can still get some type of joy from them without putting your health at unreasonable risk. One person with POTS reported she had a goal to finish college. She achieved that by enrolling as a part-time student, taking advantage of the university's resources, and enlisting friends and family to help her get to class (2). There may be some barriers when you go about achieving your goals, or finding your joy, in non-traditional ways. When your energy is limited you must get clear with yourself about your priorities and focus your energy and resources there. This focus will probably unlock some creative problem solving in you. 5. Self-advocate: Teaching other people about your conditions can be exhausting. Advocating for yourself, especially in medical settings, can be exhausting. Self-advocacy is certainly an unnecessary stressor when you are already working overtime just to live your day-to-day life. However, a lot of people with dysautonomia do report they feel like they have more control over their circumstances when they speak up. This may include communicating with a boss, coworker, or professor about your needs, making sure your doctor is not dismissing your symptoms, or choosing to educate a friend when they haphazardly make a hurtful comment. 6. Have Compassion: FOR YOURSELF! It is so easy to be tough on ourselves, especially when we get messages from the outside world that we should be doing more, we're being dramatic, or we really should be better by now. This unfair messaging can trigger us to do all the things all at once to improve our health. However, that can cause unnecessary stress and can even make our health worse if we take on too much at once. Also, it is difficult to know what is actually having a beneficial effect when we make a lot of changes at once. Remember that what works for one person doesn't work for every person, so a sustainable strategy is to make small changes over time and assess how effective they are (3). That way you are only keeping the ones that truly work for you in your life. 7. Ask for Help: Asking for help can be a hard task for anyone. If you feel like a burden because of your illness, you may be even less likely to ask for the help you need. Very often, loved ones don't know how they should help, so asking for direct support with specific things can actually make them feel in control and useful in a difficult situation. Open communication is invaluable in maintaining healthy relationships with your loved ones, in professional settings, and with medical providers (3). Tips for Friends and Family You have likely endured the diagnostic roller coaster with your loved one, experiencing repeated moments of hope and disappointment as you sought answers to their life changing symptoms. Now that your loved one has a diagnosis, what can you do to help? DO listen. DINET conducted a survey a few years ago to learn about experiences of living with dysautonomia. Results demonstrated that the most helpful thing friends and family can do is listen (4). When we talk, recognize that we are choosing to share our most vulnerable selves with you, even though it's exhausting, and even though so many people (including doctors) have rejected our experiences. Ask questions. Get clarification. And, please, listen openly. DO believe your loved one. In the same DINET survey, the second most helpful thing friends and family can do is believe us. Dysautonomia can be invisible and symptoms change rapidly. We may be bedridden in the morning, but ready to socialize by the evening. Please never assume the way we look or these rapid changes in our health mean we are faking it. Instead, support us when we feel sick and rejoice with us when we do get to engage in our favorite activities (2,4). DO gently encourage your loved one to find support. Professional support and a community of people who live with the same conditions can be essential to helping us process and validate our own experiences. Just make sure you gently encourage your loved one to find resources because some people need to process things alone before they are ready to share (4). DO follow your loved one's lead. Some people may want help finding ways to modify a favorite activity. Others may feel loss when they try a different version of a beloved activity. Never push what you think is best (4). DO NOT tell your loved one how they should feel. What your loved one feels is probably very fluid - they could experience a whole range of emotions as they adjust to their diagnosis. Comments that invalidated their "negative" emotions are harmful. In the DINET survey, participants reported that the most hurtful remarks loved one's made were: 1) You don't look sick, 2) Think positive, 3) You should feel grateful that things aren't worse (4). DO NOT impose your own timeline on your loved one's adjustment. Everyone processes change, grief, and emotions in their own way on their own timeline. When your loved one seems stuck in their grief and anger, it's natural to want to encourage them to cheer up. Please be careful on how you go about this - dismissing their feelings or pushing them into "cheerful" situations could invalidate their feelings and complicate their adjustment process (4). DO NOT take your own frustration with the situation out on your loved one. Living with dysautonomia is a stressful experience for everyone impacted by the condition, including you. You will certainly get frustrated with the situation, just like your loved one who has the condition. Remember that you are allowed to feel frustration, anger, and grief, too. Just please do not lash out on your loved one who may already feel like a burden. Instead, approach them with openness and vulnerability or try to find your own sources of support, such as a trusted friend, professional help, or a support group specifically for friends and family (4). Resources Article Citations Coping with a Diagnosis of Chronic Illness. (2013, August). American Psychological Association. https://www.apa.org/topics/chronic-illness Arotin, S. (2019, November 28). Through My Eyes: Living with an Invisible Illness. Medical News Today. https://www.medicalnewstoday.com/articles/327155 Dysautonomia Support Network. (2019, July 3). 20 Messages for Anyone Newly Diagnosed with Dysautonomia. The Mighty. https://themighty.com/2019/07/dysautonomia-just-diagnosed-advice/ MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/ Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:f2502f85-4050-46e6-8bd9-b29463a05154
  2. By: Chelsea Goldstein, Dysautonomia Information Network Perhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week. If this sounds like you, you may be at the point of considering disability support and benefits. Pursuing disability benefits can be an overwhelming and emotional process. This article is meant to be a guide to help you make a decision that is right for you, and provide you with a place to start understanding the process of applying for disability. The Decision to Leave Your Job is an Emotional One And that’s okay. 1. Talk It Out. As you labor over the decision to leave your job due to your health, it may be helpful to get input from friends, family, and your doctor. They can provide perspective on whether leaving your job permanently is a wise decision, or if a temporary reprieve may be more appropriate. A trusted doctor may be an especially important person to talk to because their support will be helpful during the disability application process. Just make sure that the people you talk to are supportive of you and aware of your condition. You do not need someone making you feel bad for not being able to get through a typical workday. Also consider seeking support outside your immediate network. Some therapists are trained to work with people with chronic illness, and the DINET forum is a great place to connect with others who have dysautonomia (1). 2. Accept Your Emotions During This Process. Choosing to leave your job can bring up a myriad of emotions including grief, loss, anger, fear, and feelings of failure. Accept that you will feel many of these things, and that is okay. Remind yourself that these emotions will pass. Many people feel an overwhelming sense of relief once they leave their jobs and focus on their health (1). 3. Be Intentionally Engaged. Make sure you have a plan to feel a sense of support and community once you leave your job. This could mean being more intentional about connecting with friends, even virtually, or finding new communities, such as support groups. Finances may become tight when you leave your job, so seek out ways to stay engaged for free or cheap, such as pursuing hobbies at home (as you are able), making reading goals, and spending time outside (1). 4. Maintain Purpose. You may feel a blow to your self-esteem as you leave your job. Try to prepare for this by making sure you still feel purpose. You could write a blog to process your feelings and help others, you could become active in a support group, or mentor someone who is newly diagnosed with your condition. Today, there are many ways to volunteer that can be done from home. If you aren't sure how to give back, a good exercise is to think how you would spend your last day on earth. Use your answer to figure out where to best invest your precious energy (1). 5. Be Prepared. Knowledge really is power. The decision to leave your job and pursue disability will be made easier if you feel prepared to make the transition. You should get an idea of what options you may have for disability pay before your paychecks stop coming in. The rest of this article is a good place to start (1). Social Security Disability Insurance & Supplemental Security Income Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) provide financial support for individuals living with disabilities. Eligibility for both programs is determined by your financial and medical situations. The major difference is that SSDI is available to people who have accumulated enough "work credits" to qualify, while SSI is for individuals who have limited income and who have minimal, or no, work history (2). Medical Eligibility: The medical eligibility criteria is the same for SSDI and SSI. Individuals must be considered "permanently" disabled to qualify for both programs. This is defined by an individual's disability having lasted (or is expected to last) for at least one year. SSDI and SSI do not provide temporary disability benefits (3). Your condition(s) must be considered severe and prevent you from working at any of your past jobs, as well as prevents you from working in a less physically or mentally strenuous job that you qualify for (4). Some conditions qualify for SSDI and SSI by meeting the strict requirements in the Listing of Impairments. Dysautonomia is NOT in the listing. You can still qualify if your condition(s) are not in the listing. You need to supply evidence that your condition causes severe functional limitations that limit your ability to do activities such as lifting, standing, walking, sitting, and remembering (4). A lawyer may be a good resource to help you navigate the disability application process especially if your condition(s) are not in the listing. Disability lawyers in each US state can be found here. Financial Eligibility The financial eligibility criteria is different for SSDI and SSI. Your income must be limited. If you earn $1,260 per month or more in 2020, you are considered to have "substantial gainful activity" and are not eligible for either program (3). SSDI requires you have enough "work credits". The amount of required work credits varies with age. Work credits are calculated by how long you have paid income taxes, and how long ago you last worked (3). You can calculate your eligibility here. SSI is available for people with limited assets and too few work credits. SSI does have strict income restrictions and you cannot have more than $2,000 in assets (with some exceptions). The general federal rate is $783/month, but the amount you get may vary based on your home state and your total household income (5). You can calculate your SSI eligibility here. Other Things to Consider If possible, take time to learn about your options. Medical Coverage. SSDI and SSI are not medical coverage. If you currently have medical coverage through a job, research how long it will last, and at what cost, if you leave your position. You will be eligible for Medicare if you receive SSDI, but only after a 24-month waiting period. You may also qualify for Medicaid, in the meantime, if you meet specific income restrictions. These vary by state (1). Application Process. Be prepared for a lengthy application process. Many people get denied on their initial application, so it may be good to plan for this. You may have to file an appeal, and denied applicants have a better chance at a hearing (1). Again, you may want to consider talking to a lawyer as you begin your disability application process. Here are several resources, worksheets, and checklists to help you prepare for a disability interview. Adults over 18 who are not receiving Social Security benefits, have not been denied SSDI in the last 60 days, and who cannot work due to a medical condition can apply online. Additional Support. You should consider other avenues of financial and medical support if you live with a disabling condition. These avenues of support could hold you over during the SSDI application process. State Disability Insurance. Some states offer temporary disability benefits that will cover a percentage of your salary (6). Company Disability Insurance. Some companies offer temporary disability that typically cover a percentage of your salary for six months (1). Pension/401K. Some pensions/401K plans can be accessed early without penalty due to disability. Check the rules of your pension or 401K, if you have one. Other Federal Programs. There are other federal programs to help individuals with housing, taxes, medical bills, and to help veterans. This page is a good place to start. Support for Children. Your children may also be eligible for benefits if you receive disability support (7). Other Countries (not USA). Some countries have Disability Living Allowances, and may even have support for caregivers (1). Resources Figuring out what disability options may work for you can be a daunting process. But, the more you know, the more you will be prepared for the transition. If possible, take some time to review your options. These resources may be good places to dig deeper. Article Citations Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/ Laurence, B. (2020). What is the difference between Social Security Disability (SSDI) and SSI? Disability Secrets. https://www.disabilitysecrets.com/page5-13.html Laurence, B. (2020). What are the rules and requirements for Social Security Disability cases? Disability Secrets. https://www.disabilitysecrets.com/the-rules.html Benefits planner: disability, how you qualify. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/qualify.html You may be able to get Supplemental Security Income (SSI). (2020). Social Security Administration. https://www.ssa.gov/pubs/EN-05-11069.pdf State disability insurance. (2019, May 17). Eligibility.com. https://eligibility.com/state-disability-insurance Benefits planner: family benefits. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/family.html#anchor3 Additional Resources Apply for Social Security Online. https://www.ssa.gov/disabilityssi/ Disability Secrets. http://www.disabilitysecrets.com/ Life After Work, When Chronic Illness Makes You Quit a Job You Really Love. https://creakyjoints.org/blog/lifeafter-work-when-chronic-illness-makes-you-quit-a-job-you-really-love/ National Organization on Disability. http://www.nod.org Online Lawyer Source. http://www.onlinelawyersource.com/social-security-disability/index.html Social Security Administration's Adult Listing of Impairments. https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm Social Security Administration's Child Listing of Impairments. https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm Social Security Administration, Disability. https://www.ssa.gov/benefits/disability/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:e0c9de08-4e39-44b2-a3fe-ccc575ade710
  3. By: Chelsea Goldstein, Dysautonomia Information Network Attending college is a huge decision for anyone. The decision becomes even more complex when you have to consider navigating college with a chronic condition, such as dysautonomia. Remember that only you know the right decision for you regarding college. There is no shame in choosing a different path or delaying college to focus on your health. We also recognize that attending college in the era of COVID-19 is difficult and may not be an option for many of us. Refer to the "For College Students" section of our article, Knowledge is ePowered: Distance Learning for People with Dysautonomia, to help make a decision about attending college remotely or in-person, especially during COVID-19. This article is for readers who currently attend college in-person or know they would like to have an in-person college experience in the future. We hope it helps you navigate some of the major aspects of college living including classroom education, medical care, housing, dining, and getting around. Navigating the Classroom Upon entering college, it becomes students' responsibilities to communicate their learning needs. Here are a few things to consider when navigating the college classroom with dysautonomia: Communication I've had the unique experience of attending college with dysautonomia, and then working as a college professor eight years later; utilizing both perspectives, I can confidently state that communicating with your professors about your needs early and often is one of the best things you can do. First, I never realized how little information professors get about student accommodations prior to becoming one. For example, I received a list of student names and accommodations when I was a professor, such as "may access class material digitally," at the beginning of the semester. That was it. So, I set up meetings with disability services, and reached out to each of my students with accommodations to learn more. Some professors will be proactive with accommodations, but many will not. Thus, we highly suggest reaching out to your professors for a short meeting to discuss your accommodations by the first week of class if you have not already heard from them by then. It may also help to bring any disability packets/forms you have from the university (1). We know this can be an intimidating conversation, so try to think of it as a "practice run" for advocating for your health later in the workforce. While you don't need to divulge a ton of information about your health, you should prepare specific ways your professors can support you. For example, you could explain that "accessing material digitally" is most important when you have a bad flare and need to attend class by calling or videoing in. Most professors will respect a student who has the maturity to communicate their needs early in the semester, and they will appreciate having a clear plan on how to best support you. Documentation Even if you establish great rapport with your professors, you should always document formal accommodations with disability services to ensure your needs are protected. I always feared disability services would deny my accommodation requests when I was a student, but I've since learned that most programs are student-centric and will not force students to go to inappropriate lengths to "prove" their conditions. Just remember that accommodations are not retroactive, meaning professors are only required to honor them after they are formalized. You may even consider meeting with your disability department prior to the school year either in-person or remotely to start the process (2,3). Documentation is especially helpful for professors who have several students with accommodations. Formal documentation allows them to advocate on your behalf throughout the university, as needed, and helps them honor your classroom needs while still ensuring "fairness" among all students. Remote Attendance (As Needed) There are an increasing number of online college programs for students who want entirely remote education experiences. Many traditional programs are also now offering their courses online due to COVID-19. While remote learning can be a great option for students with dysautonomia, we also recognize that some people want to have in-person college experiences or may be interested in a career path with limited remote options. In these cases, you may want to consider how you could attend your classes virtually on an as needed basis. My university rarely granted accommodations for students to simply miss class. Instead, they often granted accommodations for student to access all class materials digitally, as well as extended deadlines to help students work around flares. Every university is different, but if you suspect that you will need to occasionally miss class due to your health (which is likely with dysautonomia!) then you should work closely with disability services and your professors to determine how that will be established. One blogger suggests having a friend, staff member, or even the professor set up a video or phone call on an electronic device to attend class remotely, and some universities even have telepresence robots for these circumstances (4). Some professors may allow you to attend class on your own time, at your own pace by engaging with class materials and activities that are supplied digitally. Remember that professors, classmates, and even department staff are willing to help with logistics in most cases. Also don't forget to ask disability services what university resources exist to support your education in a way that works for you. You may be surprised by what is available! Preparation As I am sure you are aware, dysautonomia requires a lot of preparation. I'm often the go-to person when friends need something while we're out because I always travel with my dysautonomia survival kit that is equipped for most scenarios. This survival kit may be especially important in college because you'll be in multiple classrooms with different furniture, lighting, and temperatures, you'll have to navigate the terrain and weather as you move around campus, some classrooms may be on high floors with limited elevator access, you might not have many friendly food options on campus, and you might need to find spaces to recline throughout the day. No matter the circumstances, you'll probably need to have your emergency medications and other symptom management supplies at the ready. While this list of scenarios may seem intimidating, you have probably thought through (or experienced) most of them and more, and they are possible to navigate when you have the tools and support you need. My survival kit is filled with snacks, electrolyte packets, tons of water, extra medications, gloves, spare clothing, IcyHot, a knee brace, compression socks, mints for nausea, doggie bags for vomit, and even a chunky scarf to use for warmth or as a pad on a painful chair. My survival kit comes with one major issue, however: it's heavy! I've tried to minimize its contents over the years, but I need a lot of water and water weighs a lot. So, my kit often made my dysautonomia flare when I lugged it across campus, especially in extreme weather. Many students with dysautonomia recommend a rolling backpack for this issue (1). It may take some time to refine your kit, but once you do, make sure you always have it packed and ready. Medical Care College students with dysautonomia and other chronic conditions need to consider how they will access medical care while attending college, especially if if their school is far from home. Getting Medical Care: Medical care should be a priority of your college visits. Try to meet with student health services during your visit and ask if they are familiar with dysautonomia. You could even try to have some meet-and-greets with local doctor's offices. Virtual appointments are options with many providers if you aren't able to travel due to COVID-19 or other circumstances. Once you decide on a university, schedule an appointment with student health services as soon as possible, even if you do not plan to utilize them frequently. Bring a complete copy of your medical records to the appointment, and use this time to explain your condition(s) and how you might need support throughout the school year. You should also ask about after-hours services and the nearest hospital (2). Some people also like to arrange appointments with their regular doctors and specialists during college breaks. If that is your plan, try to schedule them as soon as possible. Since you may be far away from your usual support system of friends and family, you will want to ensure you have a way to communicate your medical information in emergencies. One person kept an emergency note in her dorm that included medications, conditions, and emergency contacts (3). Some apps also store this information, just make sure someone knows how to access it in the event that you are not able to do so. Getting Medicine and Supplies: Start by creating an "inventory" of the medicine and supplies that you use, including refill frequencies. One of the health management apps in our article, Optimized Living: Helpful Existing Technologies for Life with Dysautonomia, may help. Then do some research on the pharmacies and suppliers near your university. Can you get what you need locally? When you do your local research, identify at least two suppliers for each medication or item that you need so that you will never go without even if one supplier is out of stock or closed. You could also consider getting medicine and supplies delivered to you. In this case, make sure you know the shipping times of each item, and talk with your university mail department (if you live on campus) to make sure that they will properly care for any packages that require special handling. In all cases, an emergency stash of medication and supplies can prevent difficult, even dangerous, situations. For example, I went without an important medication for a few days in college when my insurance sporadically decided not to cover it. Since the insurance office was already closed for the weekend, I could not appeal until Monday morning. I am sure many of you have had similar situations. An emergency stash can help in these moments, especially if you are at college and have limited local support. Housing and Dining Housing Where we live has tremendous impact on our quality of life. Things such as lighting, smells, chemicals, mold, temperature control, sound, and accessibility are but a few important elements that can make or break our living environments. Take some time to identify the elements that are most important for your quality of life prior to moving into a college dorm or other shared housing. For example, I know that I need good temperature control to sleep, and that even minor chemicals and mold trigger my headaches and fatigue. Once you've identified your non-negotiables, contact the university housing department to discuss your needs. You may also want to ask them about stairs, elevators, accessibility to bathrooms, and distance to your classes. Again, most universities are willing to work with you when you are proactive. Roommates can also dramatically impact your experience, so take your time to choose them wisely. If you will be assigned a roommate, let the housing department know what qualities you need in a living companion, such as someone who is clean, quiet, and understanding. You should also consider your plan for move-in day if you plan to live on campus. At many universities, students are given short move-in times and are expected to carry heavy items over long distances, which may not work for you and your dysautonomia. One person with chronic illness recommends minimizing the items you bring to college as much as possible, and scheduling your move-in time early (3). You could also work with disability services to get an off-set moving time, to ensure elevator access, to park as close as possible, and/or to secure an extended move-in period. Dining For many of us, food is an important aspect of managing dysautonomia. We often have dietary restrictions, and we need to ensure we can get access to the foods we need when we have limited energy and mobility. As is generally the case with dysautonomia, planning ahead can help you manage your nutrition. Students can often arrange tours with food services during college visits to learn about the different options on campus, and to discuss food ingredients, preparation, and specific allergies or sensitivities. Students should also ask about the hours of different dining options, and note the distance of each option from their dormitory or department building. If you find that the food options are too restrictive at a particular university, you should seriously consider if there is a way to meet your dietary needs outside the university dining services. In this case, you may be able to appeal to your university to waive any required meal plans (5). In addition to a strong understanding of your on-campus food options, many people with chronic illness suggest having in-dorm back-up meals for when you don't feel well enough to get to a dining hall. One person suggests meal (or snack) prepping once a week to ensure you have food on hand. We know this can be tricky in a dorm, but many buildings have a communal kitchen, and you can try some of the many online dorm recipes, like these. Pinterest is a great resource for ideas, and our nutrition articles may also be helpful. Another person recommends bringing containers to the dining hall (if allowed), to pack up to-go meals for difficult days. Meal delivery services and takeout can be expensive but are other options (1). Getting Around The ability to get around campus (without exacerbating symptoms!) is yet another important factor of a good college experience with dysautonomia. Investigate You guessed it - once again, planning ahead is an important step to ensure you can navigate campus well. If possible, travel the routes you will take each day between classes before the semester starts. Take note of anything that may help or hinder your daily route. For example, one person focused on identifying the closest accessible bathrooms, which elevators moved fastest, what pathways were easiest to use in inclement weather, and the weight of doors on her route (3). Planning ahead can definitely help you to feel comfortable on campus, and it may decrease some anxiety regarding getting around once classes start (6). Even still, you could discover additional barriers once campus is crowded with students moving between classes at once (e.g., full parking lots, standing room only on buses, and long lines for elevators), or when there are changes in weather. For these instances, you could work with disability services to get an accommodation for extra time to travel between tight class periods so that you have time to navigate these barriers safely. Be ready to identify how more time could help you. For example, you could mention how you need to take a seated break when walking between buildings to prevent syncope, or that you need to use the elevator for higher floor classes and there are generally long lines during popular class change times. Driving and Public Transportation Parking is notoriously difficult on most college campuses. So it's helpful to ask yourself a few questions ahead of time if you plan to drive to class: How far are the student parking lots from my buildings? Do these lots fill up at specific times of day? Can I travel from these lots without jeopardizing my health? What if the weather is bad, or I have to carry heavy items? If any of these questions raise concern, you may want to consider getting an accessible parking permit. This article provides some guidance on getting a state issued permit, and most universities also offer their own accessible parking passes. I used a university accessible parking pass during my last semester of college that dramatically decreased my daily walk to class. I believe this was one of the most critical tools that helped me attend class and finish college with dysautonomia. I also found that the application process was relatively easy - I secured a letter from health services stating I needed a pass, and took that letter to parking services. I got the pass that day. You may want to ask yourself similar questions if you plan to use any type of public/university transportation, such as buses. How far are the bus stops from your classes? How long do you need to wait? Would you feel comfortable using accessible seating? Is the bus generally on time? Work at Your Own Pace Remember that there is no single way to pursue an education. Even when you attend college in-person, there are generally ways to modify your experience to fit your needs. I ignored my dysautonomia symptoms when I first experienced them during my junior year of college, and placed tremendous pressure on myself to handle a full course load, participate in extracurriculars, and maintain my social life even though my body was crying for a break. By the end of my senior year, I was in such terrible physical shape that I had to drop courses my last semester. To graduate, I had to return the next fall semester to take the two courses I had dropped. It was the slowest semester I had ever had. It was also the hardest, and the one that makes me most proud. I share this story because back then my shame is what drove me to keep up with the "normal" college course load, and it was also what caused me to experience a horrendous flare that ultimately forced me to drop classes and graduate from college later than expected. Looking back, I'm not ashamed at all that I didn't "keep up" with my peers. In fact, I'm incredibly proud of graduating late because I graduated during one of the most difficult times in my life, and I asked for the help I needed to accomplish this goal. So, as you plan your college course load, please consider all options available to you, and how you can realistically pace yourself. This may include some online classes, even if you live on campus, or attending college part-time. It could also mean taking a semester off. Once you settle into your course load, you may be tempted to procrastinate, just like your peers. One student with chronic illness quickly realized the dangers of procrastination if she has a flare the day before a due date, and she hasn't started her assignment (1). Here is a list of tips to help with procrastination, especially when it comes to writing. Time management tools can also be very helpful. I love the Urgent/Important Matrix because it keeps me focused on the most pressing tasks, but it's important to find an option that works for you. Also try to be realistic about your course schedule. Are mornings difficult? Avoid those 8 a.m. classes as much as possible. Is it tough to be upright for multiple hours? Try to allow for breaks between classes. Your university may even grant you early registration if you have formalized accommodations. You may find your symptoms flare unexpectedly during the year. Remember that you can always take an incomplete for a course, or take medical leave for a semester. While it is always difficult to drop a class or slow down, try to remember that you are not failing, but pivoting to prioritize your health so that you can return to your studies when you are well. You should also consider getting familiar with your university's policies on incompletes and medical leave so that you know what to expect if you need to utilize them (1,4). Above all, remember to be kind to yourself. Resources Article Citations Wyant, P. (2017, August 15). 28 Hacks That Can Make Going to College with Chronic Illness Easier. The Mighty. https://themighty.com/2017/08/hacks-tips-college-school-chronic-illness/ Shaffer, S. (n.d.). Managing Chronic Illness in College. Collegiate Parent. https://www.collegiateparent.com/wellness/managing-chronic-illness-in-college/ Ladau, E. (2017, August 10). 12 Things I Wish I'd Known Before Going to College with a Disability or Chronic Illness. https://www.self.com/story/12-things-i-wish-id-known-before-going-to-college-with-a-disability-or-chronic-illness Lewis, V. (n.d.). How I Attend College Classes Remotely with Chronic Illness. Veronica With Four Eyes. https://veroniiiica.com/2020/03/23/how-i-attend-college-classes-remotely/ Sastry, A. (n.d.). College Students With Chronic Health Conditions. EduMed. https://www.edumed.org/resources/college-with-a-chronic-health-condition/ Nelson, H. (2018, August 30). 5 Tips for Managing Chronic Illness Your First Year at College. Azusa Pacific University. https://www.apu.edu/articles/5-tips-for-managing-chronic-illness-your-first-year-at-college/ Additional Resources 25 Insanely Healthy College Meals You Can Make in a Dorm. https://bysophialee.com/healthy-college-meals/ How to Obtain a Handicap Parking Permit. https://www.verywellhealth.com/handicapped-parking-permit-189676 Just Do It: Tips for Avoiding Procrastination. https://www.law.georgetown.edu/wp-content/uploads/2018/06/Kaavya-Just-Do-It-Tips-for-Avoiding-Procrastination.pdf The Urgent/Important Matrix. https://www.ucop.edu/pmo/_files/The%20Urgent-Important%20Matrix.pdf
  4. By: Chelsea Goldstein, Dysautonomia Information Network Has your child ever felt like a bad apple because they struggled to keep up in school due to their health? We know this is the case for many children with dysautonomia, and we know that appropriate education accommodations, along with empathy from their school officials, can dramatically improve their learning experiences. It may also help to know that your child is not alone - about 25% of children in the United states from ages two to eight live with chronic illness, other physical concerns, mental health issues, and/or behavioral/learning needs (1). That's a substantial minority if you ask us, and all of these children, including children with dysautonomia, deserve environments and accommodations that make learning accessible. The law agrees. Even still, we have heard many stories from parents who have struggled to navigate the accommodation processes in their children's school districts for a number of reasons, such as administrators who misunderstand the nature of dysautonomia, minimal resources, and resistance among staff. This article will provide some tips to help make that process as smooth as possible. Learning Challenges Dysautonomia and traditional education systems don't always mesh. Here are some of the challenges your child may face, and accommodations that may help: Challenge: Absenteeism Your child may miss class for doctor's appointments and symptom flares, and the unpredictability of dysautonomia makes it difficult to prepare for absences. When students miss class, they not only risk falling behind on course content, but they also lose time with peers to build social and emotional bonds at school. These challenges can certainly exacerbate anxiety (2). Accommodations: Absenteeism A pass to leave class when your child feels unwell and a designated rest space, such as a nurse's or guidance counselor's office, could help minimize full-day absences (3). Incorporating some level of direct care at school, such as the nurse administering your child's medications, can also minimize absences (6). Flexible attendance accommodations and the ability to get assignments remotely, when needed, may keep your child on track (4). You could also try talking with your child's teacher, directly, to determine the best way to communicate missed work, or even try a buddy system where another student brings your child assignments, explains what they missed, and provides some social connection. Challenge: Poor Motivation A child with a debilitating health condition probably views life very differently than their peers. Understandably, they may not be as forward-thinking as other people their age, or they may prioritize things that bring them joy over schoolwork when they feel okay (2). Accommodations: Poor Motivation A peer tutor program could help your child look forward to doing schoolwork as they connect with another student. Similarly, you could ask the teacher to sit your child near a "role model" so that they, ideally, bond with a motivated student (5). Give your child some "skin in the game." Talk with them to help them figure out what their motivation for learning might be. Once you figure it out, return to their "why" when they feel unmotivated (5). Work with your child's teacher to get creative on assignments. Are there ways to incorporate topics of interest, characters, or other favorite themes into projects (5)? As we will mention multiple times throughout this article, strong communication with your child's teacher is critical. Consider sharing some of DINET's information guides with them, and arrange a meeting for you and your child to explain life with dysautonomia. This meeting can facilitate understanding, give the teacher an opportunity to ask questions, and provide a chance to problem solve together. Challenge: Poor Concentration Brain fog, exhaustion, medication side effects, health-related anxiety, financial difficulties, family strain due to illness, and feeling lost in school, are but a few culprits responsible for poor concentration when your child has chronic illness (2). Accommodations: Poor Concentration Extended test times provide opportunity for frequent breaks to manage symptoms and refocus (3). Note taking aids, such as recording devices, modified teacher prompts, or pull outs from class for more individualized instruction can help reinforce materials and skills. Food can both aid concentration and distract from learning. Frequent, small meals and constant hydration are helpful for many of us. Growing up, however, I was never allowed to have food or drinks in my classrooms, and I remember my mornings being filled with dizziness and blurred vision until I could eat lunch. You should communicate with your child's teacher about food/drink policies, and work together on accommodations, as needed. Alternatively, if your child eats at school and has food allergies/sensitivities, does the school adequately communicate potential allergens and provide alternative options for your child, as needed (6)? Accidently consuming harmful foods, or not having adequate options at school could cause serious health consequences and, obviously, poor concentration. Challenge: Bullying Unfortunately, students with chronic illness can be victims of bullying. A recent report demonstrates that about two-thirds of students with chronic illness felt bullied when peers ignored them, questioned them excessively, or made verbally abusive comments. One-third reported they did not experience bullying (4). Bullying is often a result of ignorance, such as when another student believes your child is contagious (2). Accommodations: Bullying Students with chronic illness may not want to draw additional attention to themselves by reporting bullying. However, their mental health is just as important as their physical health, so you should ensure your child has safe spaces to discuss any bullying experiences (6). This could include open dialogue between you and your child, and even "check-in" meetings with a teacher or counselor. Some students feel that talking about their condition with classmates mitigates bullying. Work closely with your child and their teacher to determine appropriate and safe ways to do this. Your child may even want to give an informal presentation about life with dysautonomia. They could share some of the videos on DINET's YouTube Channel with their classmates to facilitate open discussion and productive questions. These are but a few of the challenges students with dysautonomia may face. However, each student's challenges and work-arounds are different, and this list of 100 accommodations may spark more ideas about how to improve your child's learning environment. Rights to Accommodations The US has laws to protect your child's right to an accessible and appropriate learning environment. However, it can be a little tricky to decipher these laws. Let us get you started: There are three federal acts that are meant to provide students with disabilities equitable access to appropriate education without discrimination: Section 504 of the 1973 Rehabilitation Act (Section 504) was the first civil rights act to protect the rights of people with disabilities in federally funded programs, including schools. The Americans with Disabilities Act of 1990 (ADA) expanded the right to accessibility without discrimination in any areas open to the public, such as commercial businesses, telecommunications, and employment practices. The ADA defines disability as someone who has physical or mental impairments that limit day-to-day activities (3). Many people with chronic illnesses fall under this definition and should be afforded ADA protections. In addition to accessibility features like ramps and elevators, the ADA requires schools to provide resources like assistive technology and extended test time, as needed. Students' rights to participate in school-related activities, such as sports and clubs, are also protected under the ADA (3). The Individuals with Disabilities Education Act of 1975 (IDEA) is specifically targeted at schools to guarantee free appropriate public education (FAPE) in the least restrictive environment for all students with disabilities (8). How do these laws operate in the daily lives of students? They have resulted in two types of education plans called 504 Plans and Individualized Education Plans (IEPs). 504 Plans, as the name suggests, arose from Section 504. They outline accommodations to students' learning environments (e.g., where they learn or how they receive instruction), but their learning goals remain unchanged. Generally, parents, teachers, and principals collaborate to develop 504 Plans (3). Similar to the ADA, the definition of "disability" used to qualify children for 504 Plans is intentionally broad and can include invisible conditions, such as dysautonomia (9). More specifically, children with impairments that interfere with learning (e.g., difficulty concentrating or sitting for extended periods) may be eligible for 504 Plans (3,5). IEPs are another form of education plan for students with disabilities but, unlike 504 Plans, they include individualized learning goals. More extensive teams, including school district representatives, are usually involved in developing the plans (3). Children must have at least one of the specific conditions listed here to qualify for IEPs. The differences between IEPs and 504 Plans are subtle. This chart provides some clarity. Accommodation Process Next, we'll discuss the general steps of the accommodation process. Please be aware that these steps may vary depending on your state, school district, and your child's needs. You should always collaborate with local officials, use your own judgement, and you may even consult a lawyer for legal support and advice. Step 1: Express Concern If you believe your child would benefit from a 504 Plan or IEP, you should begin by writing a letter to their school principal to request an evaluation (3). This document includes clear, detailed tips for such a request, as well as sample letters. In the event the school refuses your evaluation request, they must provide adequate explanation for their decision and/or provide you with your procedural rights (9). Remember that the school district is not always right (10), and you and your child understand their needs better than anyone. This article provides several steps you can take to challenge an evaluation denial, including setting up a meeting with the school, obtaining an independent evaluation, and filing a complaint. Step 2: Evaluation Again, the evaluation process may differ depending on the school and your child's needs, and IEP evaluations tend to be a bit more in-depth than 504 evaluations. In the case of IEPs, the school may require some combination of documentation review, testing, classroom observation, and interviews (11). No specific evaluation steps are required for 504 Plans, but schools must review multiple sources of information, such as student test performance, teacher recommendations, doctor's suggestions, attendance records, and adaptive behavior. Therefore, a single source of information, such as a doctor's recommendation, is not sufficient to grant 504 accommodations (9). There are ways to challenge the results of an evaluation if the evaluating team determines your child is not in need of accommodations. This article explains several options for disputing 504 evaluation results including negotiation, a hearing, and even a lawsuit. Under IDEA, parents can request a hearing to dispute IEP evaluation results in the presence of a qualified, independent officer (3,12). Step 3: Prepare the Plan As mentioned above, the major difference between IEPs and 504 Plans is that IEPs outline specialized education goals for students, whereas 504 Plans focus only on environmental accommodations that help students work toward existing learning goals and objectives. While IEPs are required to be documented in writing, 504 Plans are not. However, most school officials do write out 504 Plans for clarity (3). Your child's plan becomes an important reference point to ensure their needs are met. Parents can take active roles in developing these plans. For example, you could request a copy of a written draft to review about two weeks before your child's planning meeting. You could also prepare your own list of proposed accommodations/goals, and share written copies of important agenda items you would like to address during the planning meeting (13). Step 4: Be an Active Team Member Getting an IEP or 504 Plan for your child is a tremendous accomplishment, it is also just the beginning of the process. Education plans can be interpreted in multiple ways, so it is important that you are an active member of your child's planning team to ensure that accommodations are enacted in your child's best interest. A special education case manager is usually a strong point of contact for IEPs (3), and some schools have a 504 coordinator. Unfortunately, plans can be executed poorly due to misunderstanding and, less often, discrimination. If communicating with your child's planning team, directly, does not solve issues, there are avenues to file formal complaints. Parents can reach out to the Director of Special Education in their area, or get in touch with the school board. If issues remain unresolved, parents can also file a written complaint with their state's Department of Education. If your child has an IEP, you should cite the components of IDEA that you feel have been violated by your child's school. You could even request corrective action, such as updating IEP goals or reimbursement for relevant education expenses (3). Many State Parent Centers share examples of complaint letters, as well as connect networks of parents who are navigating the accommodation process. Step 5: Reevaluate the Plan All IEPs and 504 Plans should be reevaluated from time to time to ensure plans grow with children as their needs inherently change. IDEA specifies that IEP plans need to be reevaluated at least every three years, while 504 Plans are only required to be reevaluated "periodically." Many schools, however, do have policies to review 504 Plans at least every three years. You can request more frequent evaluations if you feel your child's condition warrants them, and you may want to consider requesting an evaluation if your child's condition significantly changes (14). Typically, IEP and 504 reevaluations will be given once a year at most (15). Once again, these are general steps of the accommodation process intended to get you started and to connect you with more in-depth resources. The process will likely vary by state, district, and even school. State Parent Centers can provide support and resources that are more specific to your specific state's processes, and this webpage from the US Department of Education provides much more detail on the IEP process. Tips for Parents The accommodation process is often difficult for parents. Try to remain focused on securing best education possible for your child. Here's a recap of some tips to get you through the process: 1. Communicate. Are you tired of hearing us say communication is key, yet? We're going to keep saying it because, well, it is key. Dysautonomia is a poorly understood condition, and communication may be the only way to encourage understanding and empathy among your child's school officials. Communication with your child's teacher is especially important since they will be the one enacting much of their IEP or 504 Plan (2). 2. Keep Records. As mentioned above, an accommodation decision must be made using multiple sources, so the more records you have documenting your child's need for accommodations the better (2). This could include records from doctors, mental health professionals, and your child's testimony of their struggles. You may even want to keep a symptom journal that also tracks your child's school performance. What are their grades like when they're in a flare versus not in a flare? How do absences affect their grades? Such documentation could help demonstrate associations between their health and school performance. Also make sure you have written notes and records of all steps in the accommodation process to ensure it goes as smoothly and quickly as possible. 3. Get Support from Your Child's Doctor. While doctor's records, alone, aren't enough to secure an accommodation plan, they will help. A doctor's support can help officials understand the legitimacy and severity of your child's dysautonomia, and they can also provide a professional voice regarding how the condition and medication side effects may impact your child's ability to engage in school activities (2). 4. Start the Process Early. The accommodation process can take longer than you expect due to multiple steps, time needed to evaluate your child and develop a plan, and discussion among the team and parents. This can feel even longer to your child who is trying to keep up with their education in an environment not suited to their needs. (2). 5. Enlist Outside Help. This can be a daunting process for anyone, especially parents and students who have never experienced it before. You may want to connect with other parents in your area who are familiar with the process. If you do not know anyone who has a child with accommodations, there are many local advocacy organizations and online groups where you can seek advice. Again, the State Parent Centers can be another good place to find resources and support. You may even want to enlist the help of a local lawyer with experience in education if you anticipate experiencing any barriers during the process (2). Resources Article Citations Managing Chronic Conditions. (2019, May 29). Centers for Disease Control and Prevention. https://www.cdc.gov/healthyschools/chronicconditions.htm Lee, S. (n.d.). Academic Support for Students with Serious Illnesses: Learning Options, Resources, & Tips To Help Students Succeed in School. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/student-serious-illness/ McCullum, K. (n.d.). Resource Guide for Parents of Students with Disabilities: Understanding ADA, Section 504, IDEA and IEP. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/parents-students-disabilities/ Jaress, J. & Winicki, E. (2013). Our Children with Chronic Illness in School: Finding and Bridging the Gap. Georgia Department of Education. https://www.gadoe.org/Curriculum-Instruction-and-Assessment/Special-Education-Services/Documents/IDEAS 2013 Handouts 3/Our Children with Chronic Illness in Schools.pdf The 504 Plan. (n.d.) Seattle Children's Center for Children with Special Needs. https://cshcn.org/childcare-schools-community/the-504-plan/#1502821656037-0ce36015-711f Research Brief: Addressing the Needs of Students with Chronic Health Conditions - Strategies for Schools. (2017). National Center for Chronic Disease Prevention and Health Promotion. https://www.cdc.gov/healthyschools/chronic_conditions/pdfs/2017_02_15-How-Schools-Can-Students-with-CHC_Final_508.pdf Section 504 of the Rehabilitation Act of 1973. (n.d.). Disability Rights Education & Defense Fund. https://dredf.org/legal-advocacy/laws/section-504-of-the-rehabilitation-act-of-1973/#:~:text=Section 504 of the 1973,the Americans with Disabilities Act About IDEA (n.d.). US Department of Education. https://sites.ed.gov/idea/about-idea/#IDEA-History Durheim, M. (2013, September 26). A Parent's Guide to Section 504 in Public Schools. Great! Schools. https://www.greatschools.org/gk/articles/section-504-2/ Kelly, K. (n.d.) Why Your Child's School May Deny Your Evaluation Request. Understood. https://www.understood.org/en/school-learning/evaluations/evaluation-basics/why-your-childs-school-can-deny-your-evaluation-request Morin, A. (n.d.) The School Evaluation Process: What to Expect. Understood. https://www.understood.org/en/school-learning/evaluations/evaluation-basics/the-evaluation-process-what-to-expect Küpper, L. (2000, July). A Guide to the Individualized Education Program. US Department of Education. https://www2.ed.gov/parents/needs/speced/iepguide/index.html Calbos, C. (n.d.). Prepare for 504 or IEP Meetings with a Lawyer's 4 Best Tips. Impact Parents. https://impactparents.com/blog/adhd/prepare-for-504-or-iep-meetings-with-a-lawyers-4-best-tips/ Protecting Students with Disabilities (2020, January 10). US Department of Education Office for Civil Rights. https://www2.ed.gov/about/offices/list/ocr/504faq.html Jones, L. (n.d.). Does My Child's 504 Plan Have to be Reviewed at the Start of Each School Year? Understood. https://www.understood.org/en/school-learning/special-services/504-plan/does-my-childs-504-plan-have-to-be-reviewed-at-the-beginning-of-each-school-year Additional Resources DINET Information Guides. https://www.dinet.org/info/dysautonomia-disorders-diagnostics-info/information-guides-r149/ DINET YouTube Channel. https://www.youtube.com/channel/UCUZMfU6I2622J6Fv50oFaiQ DREDF Steps for Requesting an Evaluation. https://dredf.org/mail se/2011/june/DREDF_DIABETES_RequestAssess.pdf 5 Options for Resolving a 504 Plan Dispute. https://www.understood.org/en/school-learning/your-childs-rights/dispute-resolution/5-options-for-resolving-a-504-plan-dispute Parent Center Information Hub. https://www.parentcenterhub.org/find-your-center/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:996e7669-b05c-4eef-8c07-c361f4e6fe8f
  5. Mental health conditions, like depression, are often difficult to talk about because of their stigma. If you live with dysautonomia and depression you may be even more hesitant to talk about your mental health needs out of fear that your dysautonomia will be dismissed as "all in your head." Unfortunately, this can lead to improper treatment of dysautonomia, depression, or both. However, we rarely discuss how it is normal to live with BOTH depression and dysautonomia. In fact, research demonstrates that about 25 to 33% of people living with chronic illness also have depression, and understandably so (1). Dysautonomia is a life-altering condition that can bring about sudden changes in careers, relationships, physical ability, and identity. Feelings of despair, grief, and sadness are typical for anyone experiencing such dramatic change and loss (2). This article provides a brief overview of the types and symptoms of depression, and how depression may present with dysautonomia so that you can work with your medical providers to get appropriate treatment for your physical and mental health. Types and Symptoms of Depression These are general descriptions of depression, and each person's unique experience may not fit within these exact categories. If you suspect you may have depression, you should seek diagnosis and support from a qualified medical professional. Clinical Depression Clinical depression refers to a group of conditions that are long lasting and not necessarily triggered by a specific event or stressor. They can interfere with a person's ability to engage in everyday activities, including work, school, self-care, and family. People with clinical depression will generally experience five or more of these symptoms (1): Difficulty sleeping/sleep change Inability to enjoy activities Agitation or extreme lethargy Feeling worthless/self-hatred Extreme guilt Suicidal thoughts Extreme weight loss or gain Increased irritability in children There are several types of clinical depression. Common types are (3): Major depression - a low mood is regular and all-consuming Persistent depressive order - a low mood for at least two years that may not be as severe as major depression Bipolar disorder - episodes of depression AND high energy Seasonal affective disorder - depression due to shorter days Perinatal/postpartum depression - occurs during pregnancy and/or in the first 12 months after birth Situational Depression Situational depression can occur after a major life event, such as a divorce, job loss, death, or significant change in health. Some sources report that symptoms usually surface within the first 90 days after the trigger (4), and subside within six months (5). The symptoms of situational depression can be very similar to symptoms of clinical depression with the differentiating factor being a specific triggering event (1). It is normal to experience depressive symptoms after such profound loss (1), and you may experience them throughout your adjustment to your new life situation (4). It is also important to note that situational depression is different than post-traumatic stress disorder (PTSD), which usually lasts longer than situational depression and is characterized by anxiety, flashbacks, and reliving traumatic experiences. However, depression and PTSD can co-occur (5,6). Depression and Chronic Illness As mentioned above, it is normal for people with physical chronic illnesses to experience depression. It can be difficult, however, to understand the relationship between your physical and mental health when you are dealing with multiple conditions. Most people with chronic illness will experience some type of mourning as they adjust to their circumstances of living with their condition(s). Feelings of grief, loss, mourning, and sadness may or may not be related to clinical or situational depression (1). Regardless of the cause, it is important to remind yourself that there is no shame in experiencing a full range of emotions no matter your life circumstances. While only a qualified medical professional can diagnose depression, it is important that you are aware of its symptoms so that you can seek appropriate professional support if needed. This is particularly important for people living with dysautonomia and related chronic conditions because common symptoms of these physical conditions, such as fatigue, appetite changes, brain fog, and insomnia, can also be symptoms of depression. Unfortunately, people with chronic condition(s) and their loved ones frequently dismiss these symptoms as "normal" parts of living with chronic illness when they may be related, in part, to depression (2). A strong understanding of your underlying physical and mental health is critical to getting appropriate support. Individuals living with dysautonomia should also be aware of medication-induced depression, or depression that results as a side effect of specific medications. A thorough review of your medical history, an inpatient exam, and even lab work to confirm the amount of the suspect medication in your bloodstream are the best ways to determine if you are experiencing medication-induced depression. If you are starting a new medication, it may take your body about four weeks to acclimate. You may want to work with your medical professional to switch to a different medication if you are experiencing depressive symptoms after four weeks that onset with the new medication. While situational depression is common and expected among people adjusting to life with chronic illness, it is also normal for people to live with multiple chronic conditions, including clinical depression. If you find that your symptoms of depression are long-lasting, try to remember that you cannot force yourself to "just get over it" no more than you can will your body to magically cure your dysautonomia. Instead, recognize that these longer-lasting symptoms may be an indication that you are living with clinical depression, and you deserve access to support and management strategies to be as well as possible. Similarly, it is important to understand that you can experience more than one type of depression at a time (1). Living with chronic illness and depression in a society full of stigma is tough, to say the least. Dealing with dysautonomia can bring about depressive symptoms that, in turn, can impact the management of your dysautonomia (1). Try to be kind to yourself as you navigate these complexities. Management Options These are a few general management options. You should work with your medical professional to tailor a plan specific to your needs. Early diagnosis of depression among people with chronic illness has been shown to lead to overall improvements in health, better quality of life, and stronger adherence to medical management plans (2). These results demonstrate that it is best to seek professional support and treatment as soon as possible if you suspect you may be living with depression. Some management options include: Medication: Medication is not right for everyone, but can be an effective management tool for some people. It is not fully understood how antidepressants work, but they are believed to effect the brain chemicals involved in depression (2). It may take some time and a strong understanding of your overall health to find a medication regimen that works for you. Psychotherapy: Psychotherapy, also referred to as simply "therapy," is an umbrella term for a number of techniques used to treat depression, and other mental health concerns. Goals of psychotherapy may include understanding major life events (e.g., illness, family issues) that have contributed to your depression, identifying behaviors, emotions, or thought patterns that feed depression, and regaining a sense of control and joy in life (2). Support: While medication and/or psychotherapy may be appropriate options for managing your depression, it is also important to surround yourself with supportive environments where you feel you can discuss your mental health openly, either in-person or online. The DINET Forum is one space where you can virtually connect with other people living with dysautonomia, as well as provide support to fellow members. It can be surprising how much helping someone else can positively impact your own mental health. Combination management: It may take time and open communication with your medical professionals to find the management plan that works for you, and you may find that your ideal plan is a combination of medication, psychotherapy, support, and/or other lifestyle adjustments such as diet, meditation, and exercise. In fact, it is quite normal to manage depression with multiple techniques, just like dysautonomia. Just remember that it may take some time to figure out what works for you, and what works today may change over time. If you or a loved one are experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. Resources Article Citations MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/   Chronic Illness and Depression. (2017, January 17). Cleveland Clinic. https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression Merz, B. (2018, June 9). Six Common Depression Types. Harvard Health Publishing. https://www.health.harvard.edu/mind-and-mood/six-common-depression-types Higuera, V. (2018, September 28). Situational Depression or Clinical Depression? Medical News Today. https://www.medicalnewstoday.com/articles/314698 Mental Health and Adjustment Disorder. (2018, October 18). WebMD. https://www.webmd.com/mental-health/mental-health-adjustment-disorder#3 Tull, M. (2020, March 27). The Relationship Between PTSD and Depression. Very Well Mind. https://www.verywellmind.com/ptsd-and-depression-2797533 Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness Creaky Joints. https://creakyjoints.org/support/depression/ NOTE: This article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:9e6036eb-16ba-41a1-9bf8-09af8c281b48
  6. By: Chelsea Goldstein, Dysautonomia Information Network Homeschool, distance learning, remote education, e-learning, and tele-education are but a few terms to describe the various structures of schooling that can be done from home (either full-time or part-time) with the assistance of technology. To minimize confusion, we will refer to all of these terms as distance learning for the rest of this article. If you or your child lives with dysautonomia, you may have been engaged in distance learning for some time. You may also have a story of your tireless battle with a school system to get distance learning accommodations. It is notoriously difficult to get these accommodations approved, especially when conditions are invisible, even though research demonstrates that students experience increased anxiety and poorer academic performance when they try to "catch-up" on classes they missed due to medical reasons (1). Insert 2020, and distance learning is more or less a norm. On one hand, it can be infuriating that distance learning is all of a sudden available to all students when it was a struggle to get it previously. On the other hand, it can be a relief that you or your child is finally getting access to an education style that works for your needs. Student Rights If you have struggled to get approval for distance learning for your child who has chronic illness, it is important to know that they have rights. Children have a right to free appropriate public education (FAPE) through the Individuals with Disabilities Education Act (IDEA; 2). IDEA was enacted to ensure appropriate special education, accommodations, and related services are available to students with disabilities in public schools (3). Given this law, why do so many students with dysautonomia struggle to get education accommodations, especially accommodations for completing some or all of their education from home? Private schools are not held to the same federal standards (4), so if your child attends an unaccommodating private school you may want to consider talking with your local public school district. The term "disability" is loosely defined and often misunderstood. Many people have a stereotypical, singular view of disability represented by a permanent/progressive condition, and full-time use of a mobility aid, such as a wheelchair. More often than not, people with dysautonomia don't fit in that category. We may or may not use a mobility aid, and if we do we don't always need it 24/7. Many of us "look healthy" on the outside, and the roller coaster nature of our symptoms can cause people to point to our good days and say "They're fine!" Educators should be aware of, and open to, recognizing the diversity among people with disabilities but, unfortunately, this is not always the case. When a decision-maker doesn't understand the complex nature of disability, students with dysautonomia may be labeled as "not disabled enough" for distance learning accommodations. IDEA states students have a right to appropriate accommodations, but the term "appropriate" is also poorly defined. When educators don't understand the nature of dysautonomia, they may decide that distance learning is not an appropriate accommodation for a student with the condition. Section 504 of the Rehabilitation Act also protects the rights of students with disabilities in public schools. Briefly, it states that no student should be denied the benefit of services that receive federal funds, including schools (3). If attending school in-person causes your child's dysautonomia to flare, then you could argue that they are being denied the full benefit of education. The Americans with Disabilities Act is also in effect to protect people with disabilities from discrimination (3). It could be considered discrimination if your child is denied accommodations that promote learning in a suitable environment. The ADA has a broad and encompassing definition of disability. Distance Learning Options There are several ways distance learning can happen to meet your child's needs. Here are some things to know: Communication is key. You should expect to be in frequent communication with your child's school system to arrange and enact distance learning accommodations. It is possible that your child's school has not worked with any, or very few, students with dysautonomia, so you will likely need to take an active role in developing an education plan that works for your student. In other words, "the squeaky wheel gets the grease." You may want to start by communicating with your child's doctors. How could your child's treatments affect school performance? Could a doctor help explain to educators how the symptoms of dysautonomia arise abruptly and make in-person classes difficult (4)? Educators may be far more likely to grant accommodations with a doctor's statement of support. It is also important that both you and your child build open communication with your child's teachers and administrators. It may take some time for people who have no prior exposure to dysautonomia to understand it, and these open communication channels will help educators get acclimated to your child's needs and symptoms so they, ideally, develop understanding and empathy over time. Even if you have formal accommodations already in place, teachers may be more likely to reinforce and respect those accommodations when they have a personal understanding of your child's needs. Option 1: Individualized Education Program (IEP) An IEP may be suitable for a student who does not need full-time distance learning, but would benefit from accommodations for frequent absences, modified educational goals, and support to meet those goals. This may involve counselors, teachers, and school psychologists working with you and your student to develop customized learning goals that fit your student's needs and abilities. IEPs are free of charge in public schools, and the school should provide any support services needed (e.g., a tutor) to help your child achieve their education goals (4). 504 Plans are similar to IEPs with one major difference - they do not outline specialized education plans or goals, but rather focus on ensuring accessibility accommodations. So, if your student does not need any modified education plans, but does need assurance of accessible education, then a 504 Plan may be ideal (6). Option 2: Homebound services Homebound services may look a little different in each school system, but they are, essentially, some type of education provided at home (or another public location, like a library) for students who cannot attend school due to medical reasons. Homebound services can be offered short-term or long-term, and allow students to learn the same subjects as their peers (5). When using homebound services, schools may also provide families with needed technology, such as computers, and encourage multiple avenues of communication through email, phone calls, video conferencing, and virtual learning environments, such as Blackboard. However, some schools may be resistant to providing homebound services because they can be expensive, may require extra teacher time, and they place significant responsibility on the student and parent(s) to manage the child's education (1). Of course, homebound services may be more readily available due to COVID-19, when many school systems are providing distance learning options for all students. One student writes in her blog that she had tried to get distance learning accommodations for years without success. Now that she can learn from home due to COVID-19, her migraines have dramatically improved (2). As mentioned above, it can be frustrating to be denied needed accommodations for years only to have them granted during a pandemic. The silver lining may be that while distance learning is challenging, teachers, administrators, and students are all growing more acclimated to this e-powered style of education. Your future battle may be advocating for the continuation of distance learning for your child, as needed, when the majority of students return to in-person classes. Option 3: Tutoring Tutoring can often be incorporated into IEPs and homebound services, or families can hire their own tutors to supplement their child's education. A major benefit of tutoring is that it is more flexible and casual than formal classroom instruction. If your child has struggled to keep up with education goals due to their dysautonomia, tutoring may provide that comfortable, "low-stakes" environment that helps them learn without added anxiety. The one-on-one nature of tutoring also means that your child and their tutor can focus on your child's specific challenges (5). I tutored for several years in my twenties and it worked well to accommodate my own dysautonomia because I could arrange my own hours and tutor via video conference when I was in a flare. I loved working with homebound students and students with IEPs because it filled my daytime hours when other students were in school, and I felt I could use my own experiences of living with chronic illness to connect with students who needed adjusted learning environments. In other words, you may have a lot of options for tutors if you are looking for someone to tutor during daytime hours, and you may also want to consider a tutor that has experience with IEPs and chronic health conditions. Option 4: Hospital-based learning Many hospitals provide education support for children who spend long stretches of time in the hospital. Typically, a nurse, social worker, or case worker can help direct you to on-site education resources. Support usually comes in the form of classroom learning, which is small groups of children who are taught in a hospital classroom, and bedside learning for children who are too ill to leave their hospital rooms. Hospital educators are licensed teachers, will work with a child's home school, and should work around the child's medical tests and energy levels (4). Remember that your child may need some type of combination approach - flexibility is key! For Parents School may be low on your priority list when you are helping to manage your child's medical care and day-to-day health. Here are a few tips for education support: Our tips for parents come from this awesome blog by a woman who homeschools her children with chronic illness (7). A brief recap... Know your child's signs. A sign may be a look, expressing irritability, a lack of focus, etc. Your child's signs probably signify pain or exhaustion, and when the signs arise it is always best to take a break. Know your child's prime hours. Some people with dysautonomia struggle in the morning or have a late-afternoon slump. When does your child function best? It's probably not realistic to do school work seven hours a day, so try to maximize those prime hours. Watch for depression. Your child may feel depressed if they have minimal energy to engage in "typical" activities for their age, like school. Our article, You're Not Alone: Understanding Depression and Chronic Illness, may be a good place to start to learn how depression and dysautonomia may coexist. Try to stay socially connected. Connection can be a strong tool to manage depression, and your child may be feeling a lack of connection if they are homebound, especially in the age of COVID-19. While in-person interaction with friends may not be an option, encourage your student to stay connected with others through email, phone calls, video chats, and even participation in vetted, online support groups or interest groups. You could also talk with your child's teacher to have their classmates write letters, emails, or put together a small package. Let go of extras. It can be enticing to encourage, or even push, your child to participate in extracurricular activities that they have always enjoyed. If your child is struggling to keep up with school, let alone extracurriculars, this encouragement could quickly turn a beloved activity into a source of stress. You may want to consider asking the organizer if there is a way your child could decrease their responsibility, such as sharing an officer position in a club with another person, or if the activity is something that your child can drop-in on only when they feel healthy enough to do so. If modifications aren't possible, consider letting go of the activity. Your child can always return to it if their health improves. Prepare for good days and bad days. This blogger has created good and bad day lists with her son. On good days, he works down a master list of assignments for each subject. This helps him use his energy on substantial schoolwork, rather than trying to figure out what to do next. His bad day list includes less taxing activities that are still mentally stimulating, such as creating a YouTube playlist of course content, listening to an audio book, or finding relevant current events online. What if YOU are the one with dysautonomia and you are suddenly responsible for managing your child's distance learning during COVID-19? Parents all over the country are struggling to manage distance learning in the age of COVID-19. As you navigate these times, please, please take it easy on yourself. You are parenting, managing a debilitating chronic illness, AND you may suddenly be a homeschool teacher, among all of your other obligations. It's okay to get frustrated. It's okay to be overwhelmed. It's okay to set your to-do list aside. And it's okay to say "good enough." You may also have an option of whether your child attends school in-person, remotely, or some combination of the two. Know that whatever you choose for you and your family is the right choice. For example, if your child's school district is holding classes in person, you may worry about your child catching the virus and exposing you and the rest of your family. If this is the case, you may want to request distance learning accommodations. Or, perhaps, you have the option of in-person classes and you just don't know how you will manage your days without the break from parenting that school provides. In this case, you may want to have your child attend in-person classes, while ensuring that both your child and their educators practice precautionary measures to keep you and others as protected from the virus as possible. If you do decide to move forward with distance learning, here are a few tips to help you manage it all: If you have the resources to hire help, such as a tutor or housekeeper, you should not feel guilty for doing so! Do what you need to do to get through this unprecedented time. Maybe you don't have the resources for professional help, but you may be surprised at who is willing to pitch in! Perhaps a grandparent may want to assist with schooling, or your spouse could rearrange some of their obligations to help. This may even be a good time to team up with another parent, or small group of parents who want to share distance learning responsibilities. As long as you all agree to keep your pod tight to minimize risk of spreading the virus, your children could "switch off" between parents so that you have some days that you are not responsible for schooling. Remember that your family's physical and mental health are priorities during this time. People who are frustrated or in pain can lash out. Try to forgive your child's outbursts, as well as your own! Most importantly, be sure to give yourself and your child(ren) breaks as you need them, and don't forget to still find ways to have fun (7)! For College Students If you are a college student with dysautonomia, you may have options as to whether your education is online or in-person, and your options have likely been dramatically impacted by COVID-19. Deciding whether or not to attend college in-person when you have dysautonomia, let alone when you have dysautonomia AND there is a pandemic, is an important and difficult choice. Here are some things to consider: Dining: If you have dietary restrictions, you should definitely do some research into how accommodating and flexible dining is on any potential college campus. Some questions for an admissions counselor could include: What food options are there for your specific dietary needs? What are the hours of different dining areas (i.e., are they open when you typically need food)? Where are the dining options located in relation to your dorm and classes (i.e., how far will you have to walk to get food if you do not feel well)? Considering COVID-19: Many universities have changed their dining arrangements to minimize the risk of spreading COVID-19. This may include restricted dining hours, or prepackaged meals delivered to dorm rooms. If you use diet to manage your symptoms, then you should evaluate whether or not COVID-19 dining rules could impact your health. One person with chronic illness reported that limited food options on campus during COVID-19 was a major reason he decided not to return to campus. He knew his health could quickly deteriorate without easy access to the foods he needed (8). Scheduling: Every college student knows the stress of enrollment, especially when they need to take those difficult to get into courses. In addition, people with dysautonomia have to consider what times of day they can realistically get to class. Early mornings are out for most of us, and back-to-back classes without a long enough break to lay flat may also limit your options. Talk to your advisor(s) about any scheduling accommodations you may need. At some universities, students who register for accommodations through disability services get earlier enrollment slots. Scheduling can be one reason people with chronic illness prefer online courses - oftentimes, they can be completed on more flexible timelines, and even when they are scheduled for specific times you can save energy by learning in the comfort of your home environments (and maybe your PJs; 9). Considering COVID-19: Similar to dining, the availability of classes and opening hours of other on-campus services, such as the gym, may be limited during COVID-19. One student talks about how he has to plan his exercise at precise times to avoid exacerbating symptoms (8). If you have dysautonomia, mild exercise may be an important part of your health routine, but you likely also have to be meticulous about planning it around your eating, resting, and class hours to avoid negative symptoms. Will this be possible with COVID-19? Medical Care: A major consideration for college attendance is how you will get access to your medical care, especially if you attend school far from home. Some students coordinate appointments with their specialists when they are home on breaks, and are able to get medications and other medical supplies mailed to their universities. Even if you are able to coordinate most of your medical care from afar, you should still communicate with local providers to ensure someone can help you in emergencies. Is the university health department aware of dysautonomia? What is the reputation of the local hospital? Considering COVID-19: It is daunting to think about a potential outbreak of the virus at your university, but it is an important precautionary measure to consider if you have dysautonomia. So, if there is an outbreak, do the local healthcare facilities have the capabilities to handle it? Would the local providers know how to manage COVID and your dysautonomia (8)? Support: Support is important for anyone living with dysautonomia. It may be especially important if you are attending college in-person far away from your typical support networks of friends and family. If you are being assigned a roommate, you may want to let your college know about your condition and the type of environment you need to stay healthy so that they can match you with someone with similar habits or needs. You could also talk with admissions and disability services about any available support or advocacy groups on campus. Considering COVID-19: While emotional support is absolutely critical as you attend college with chronic illness during a pandemic, you may also want to consider the more tactical meaning of the term support. What is your university's policy for quarantining and isolation if you get COVID-19 while on campus? Would someone be able to help you with day-to-day tasks if your family is far away, and it is not safe for you to go home? It is important you discuss the possibilities with staff, faculty, and your family so that you have an idea of how you could handle the situation if you do get sick. Mental Health: College is a time filled with tremendous adjustment for everyone. It may be particularly difficult when you factor in chronic illness. We all know the level of planning, foresight, flexibility, and management that is required to get through day-to-day tasks with dysautonomia, and it is important that you take the time to honestly assess whether you feel up to managing your health needs in a college environment. You may even consider talking through your options and concerns with a mental health professional. Remember that you should never feel ashamed if you decide that attending college in-person is too difficult or stressful given your circumstances. You made an honest and brave decision! There are several alternative options that range from entirely online programs to attending some classes in-person at a local school while you live at home. Considering COVID-19: If you have felt any type of anxiety or unease as you have read through these considerations, you may want to think about attending college remotely, for now. There is no reason to put yourself at physical and mental risk, and you can always attend college in-person when it is safer to do so. Resources Article Citations Jaress, J. & Winicki, E. (2013). Our Children with Chronic Illness in School: Finding and Bridging the Gap. Georgia Department of Education IDEAs Conference. https://www.gadoe.org/Curriculum-Instruction-and Assessment/SpecialEducationServices/Documents/IDEAS%202013%20Handouts%203/Our%20Children%20with%20Chronic%20Illness%20in%20Schools.pdf Rosewater, J.T. (2020, July 5). Access to Distance Learning for Students with Chronic Illness. Third Estate Art Quaranzine. https://www.thirdestateart.org/quaranzine/2020/7/2/m437w6bfalev0qnk82hel5dutkwhc6 About IDEA. (n.d.). US Department of Education. https://sites.ed.gov/idea/about-idea/#Rehab-Act Pollio, L. & Sciolla, J. (2019, October). Balancing Academics and Serious Illness. KidsHealth. https://kidshealth.org/en/parents/academics-illness.html Lee, S. (2020). Academic Support for Students with Serious Illness: Learning Options, Resources & Tips to Help Students Succeed in School. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/student-serious-illness/ What is the Difference Between an IEP and a 504 Plan? (2019, April 30). University of Washington DO-IT (Disabilities, Opportunities, Internetworking, and Technology). https://www.washington.edu/doit/what-difference-between-iep-and-504-plan#:~:text=The%20504%20Plan%20is%20a,access%20to%20the%20learning%20environment Woodie, H. (n.d.) Homeschooling Teens Who Have a Chronic Illness. Blog, She Wrote. https://blogshewrote.org/homeschooling-kids-with-chronic-illness/ Spangenburg, E. (2020, August 3). Student Voice: 'How Can I Ensure My Own Survival When There are No Guarantees for Even My Healthiest College Classmates?' The Hechinger Report. https://hechingerreport.org/student-voice-with-diabetes-and-opting-to-stay-off-campus/ Donovan, J. (2015, July 21). How Online Learning Benefits Students with Chronic Health Issues. ValuED. http://blog.online.colostate.edu/blog/online-education/how-online-learning-benefits-students-with-chronic-health-issues/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF Link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:9be94802-c9d3-41e0-9f7d-90062a75c719
  7. By: Chelsea Goldstein, Dysautonomia Information Network One of the many difficult aspects of living with dysautonomia is that very few products are designed specifically for our needs. The medications we take are usually considered "off-label" for dysautonomia, we use hydration products designed for athletes or children, and assistive technology is often created with other populations in mind. I will continue to dream of, and advocate for, a world where people with dysautonomia have a voice in the creation of technologies that support our everyday lives. In the meantime, this article will share a handful of technologies that people in our community use regularly. Each product will include a dollar sign rating to indicate cost (FREE; $ = 0-20 USD; $$ = 21-50 USD; $$$ = 51+ USD). DINET is not affiliated with any of these products or companies, we do not receive any benefits from sharing them with you, and we have vetted the products we have not personally tried through reliable third party resources. If you do, however, want to support DINET don't forget that you can shop through our Amazon Smile page! There are thousands of technologies we don't talk about in this article that may help you, and we applaud your creativity for adapting them to fit your needs. Just make sure to always do your research on any new gadgets. Symptom Management The amount of technology available to monitor specific symptoms and to manage symptom flares is overwhelming. Here are a few that may be specifically helpful for people with dysautonomia: Portable Fan ($ - $$) The fan technology has come a long way in the past several years. There are rechargeable USB options that can sit on desks, as well as ones that fit around your neck for hot summer days. We know how overheating can come on quickly and relentlessly when you have dysautonomia, and a portable fan may help you minimize symptoms. One person reports carrying a small fan around the house with her at all times, and setting it next to her bed when she sleeps (1). No Touch Thermometer ($$) Body temperature has become an important measurement in the age of COVID-19, but the standard body temperature ranges don't always fit people with dysautonomia. My temperature runs unusually low, but it's not uncommon for it to spike into "low grade fever" range after being in the sun for just a few minutes. A no touch thermometer is easy to use, and it has helped me identify my body temperature patterns. This has given me peace of mind when my temperature spikes, as well as helped me explain my temperature regulation symptoms to others. Pulse Oximeter ($$) This is a convenient and portable tool to measure pulse rate, pulse strength, and blood oxygen saturation levels. This can be especially helpful for people with POTS to track their pulse rate when they change positions (1). Apple Watch ($$$) This is an expensive product, but its heart monitoring features may make it a worthwhile investment for people with dysautonomia. It can monitor your heart rate and notify you if it is unusually high or low (you can change the heart rate range to fit you), it occasionally checks for irregular heart rhythms, and you can download an app to get an ECG reading. Note that these features are currently being reviewed through scientific studies, but show promising initial results. It also has embedded fall detection, can serve as a medical ID bracelet, and can store your health records through the health app (2). While all of these features can be immensely helpful to detect unusual circumstances and to help you understand your health patterns, you should seek professional medical advice, testing, and monitoring for any suspected heart irregularities. Fitbits have many similar features (3). Symptom Monitoring Apps (FREE - $) Blood pressure (BP) apps allow you to input your BP data to visualize patterns over time, set reminders, and export your stats. Both Blood Pressure Monitor for iOS and Blood Pressure Watch for Android are free with in-app purchases (4). Plant Nanny is a free app that helps you ensure hydration, and Manage My Fatigue helps you manage tasks to optimize energy levels (4). Let's not forget Daylio, a super-cool app that helps you identify patterns in your mental health (6). Health Management Similar to many symptom management technologies, these products can help you track and organize health data to improve your overall understanding of your health. Symptom Tracking Apps (FREE - $) The symptoms of dysautonomia are so numerous and intertwined that it's difficult to identify specific symptom patterns. These apps provide a single platform to track multiple symptoms so you can better understand your health changes over time. Flaredown is a free tracking app designed for chronic illness, and Tally and Symple are both free with the options of paid upgrades. CareClinic embeds medication reminders and is $9.99 per month (5). You may want to explore a few options to find one that can be customized to your specific needs. Medisafe App (FREE) This is a medication reminder app that is reported to be incredibly helpful by a number of people with chronic illness. It provides medication reminders (take that, brain fog!), warns of potential drug interactions, and you can even communicate with healthcare providers through the app (6). Health Record Management (FREE) Raise your hand if trying to organize, track, or find your health records has induced a migraine! Backpack Health is designed to organize your records digitally, and it can be used on most electronic devices from smartphones to laptops (4). If a new app sounds daunting, I also like to use Google Docs to store all of my records in organized folders that are easy to access at doctor appointments through the app. This document discusses the HIPAA compliance of Google products. Another frustrating aspect of medical records is trying to view images from our many, many medical tests only to find those images aren't supported on our computers! RadiAnt is a free, downloadable program that can open most "DICOM" files, such as CTs, MRIs, and Ultrasounds (4). Smart Medical Reference (Free) In a perfect world, we would leave every doctor's appointment with a clear understanding of the records we reviewed together, the medications prescribed, the bodily mechanisms explained, and our next steps. I, for one, do not live in that perfect world. We suggest reading our articles on Navigating the Health System for effective communication strategies with doctors, and the Smart Medical Reference app is a great resource to make lab values, medications, and other medical terminology even more accessible. Telehealth (Variable) While COVID-19 has been harrowing, one silver lining may be that it has encouraged more doctors to use telehealth. Certainly there are instances when in-person visits are crucial, but if it takes excruciating energy to get to appointments, or the thought of entering a medical establishment triggers nightmares of giant, personified infectious germs (just me??), then you may consider talking to your doctor(s) about transitioning some of your care to telehealth. Relaxation & Sleep Sleep and relaxation are important to help regulate the autonomic nervous system. However, sleep, especially, doesn't always come when we want it to. These tools can help. White Noise Machines (FREE - $) It's no secret that sleeping is not usually one of our talents. A major tool that helps compensate for my subpar sleep skills is a white noise machine that drowns out all those teeny-tiny noises that stir me awake. There are thousands of options from smartphone apps to stand-alone machines. But, what if your partner can't sleep with white noise, or worse, their snoring overpowers it! Enter pro tip: these Bluetooth Sleep Headphones have been a magical addition to my life. The headphones are soft felt embedded in a comfy headband (not the kind that gives you a headache) so that you can channel that beautiful white noise directly to your eardrums without the pain of earbuds jabbing you throughout your slumber. The headband even creates a surround sound effect and can be pulled over your eyes to double as an eye mask. I promise, I'm not getting compensated for this endorsement... I just have a slightly unhealthy obsession with these headphones. Meditation and Breathing Apps (FREE - $) I know, I know - you've probably been told 1,000 times that you "just need to relax" and "take some deep breaths." That is not what this article is saying - we know these apps won't cure your dysautonomia. We also know from research that meditation and deep breathing can activate the parasympathetic nervous system (the one that encourages slower heart rate and digestion, 7). So while relaxation techniques probably won't cure your conditions, they may help you manage some of the symptoms. There are several apps that you can use to guide your meditation or breathing practices: The Headspace app is a great tool for those who want to build a regular meditation practice into their day. Their short meditations are designed for beginners, you can track your progress in the app, and you can even pair with another user for accountability. The Calm app is another popular meditation resource. It provides guided meditations, breathing exercises, and even sleep stories. TaoMix2 also comes highly recommended. It provides multiple soundscapes, such as background chatter or crashing waves, that can help you relax, meditate, and sleep. You can even create custom sounds by mixing and matching the ones in their library (6). Computer Use & Executive Function Most things happen on devices these days. These techy tools may help you work with those devices: Windows and iOS Accessibility Features (FREE with device) Both Windows and iOS offer accessibility features for laptops, desktops, tablets, and smartphones. Text size, color, and icons can all be modified to fit your viewing needs. For example, you could minimize the contrast or brightness on your computer screen to decrease chances of a migraine. Both systems also offer screen reading technology and magnifying options to increase the size and resolution of specific content. Details on iOS and Windows accessibility can be found at these respective links. NonVisual Desktop Access (NVDA) (FREE) This is a free, downloadable screen reader that is compatible with Windows devices. Two men who are blind started the non-profit that designed this program with the mission that everyone deserves access to computers. If you are able, you can make a donation on their website to help sustain this awesome, free product (4). Notes and Reminders on iOS (FREE) Has the statement, "Remind me to do X tomorrow" ever worked for you? Yeah, me neither. The Reminders app is a way to actually remind yourself to do the thing tomorrow so you don't have to stress about remembering that to-do item today. I also keep several running lists in my Notes including a grocery shopping list, gift ideas for specific people, and even song, book, and movie recommendations. Without having ready-to-access lists with me at all times, I would definitely forget the thing I just thought of approximately five seconds after I thought of it. Lists can also be shared and updated by multiple iPhone users so that you and your family members don't have to constantly remind each other to grab items at the store, for example. There are similar features available on Android phones. Google Calendar (Free) Most of us with brain fog need multiple systems to stay organized. Paper planners are great, but an online one means you don't have to worry about bringing your planner everywhere you go. Google Calendar can be accessed on all of your devices, you can input events the moment they come up, and you can even color code them if organization makes your brain fog give a large sigh of relief. I love that the calendars can be shared with others. This feature can be incredibly helpful for coordinating rides to appointments, etc. Trello (Free) I promise this is the last time management tool I'll mention in this article. Lists and Reminders are great ways to track those day-to-day obligations, and a Calendar is wonderful for scheduled appointments. However, I can feel a little lost in the sea of brain fog without one centralized location to track everything I need to get done. This is where Trello comes in. It is essentially a master to-do list that can be broken down into multiple, more manageable lists. For example, I have a list of items I am currently working on, a near future list, and a "Parking Lot" list of things that aren't as urgent. Items can be color-coded (e.g., all of my medical items are green), and when you click on each item you can add a checklist of multiple steps, write a more detailed description of the item, add a due date, and even invite other people to edit and view the item. These features reduce my stress because I know all the things I need to get done are organized and easy to view in Trello, but I can focus on just the most immediate tasks. Pro tip: when I complete an item I move it to a "To-Done" list. Anytime I get down on myself because I don't have enough spoons to accomplish as much as I intend, I look at my growing "To-Done" list to remind myself of all that I have already accomplished. Audio and Video Recording (FREE - $) Most smartphones and laptops are able to record audio and video. These can be really valuable tools if you miss a meeting or class due to your illness. In graduate school, I had a friend audio record classes that I missed for medical appointments. She also shared a copy of her written notes, and the combination of visual and audio material helped me stay on track in the course. If you are unable to attend a class or meeting in-person or virtually, these can be great tools to supplement written notes or minutes. Some people even like to audio record a class/meeting when they are present to review later and help combat brain fog. Just always make sure that you have permission, and everyone in the space is aware that you are recording. Livescribe Smartpen ($$$) This is one of those expensive products, like the Apple Watch, that may be worth the investment for some people. It is a pen that audio records a lecture, meeting, etc. while you take notes. The cool part - it syncs what you are writing with the audio, so you can "click" on a written note and it will play the audio from the respective portion of the recording. This can be a really efficient way to take notes and study. It can also be helpful if you struggle with taking complete written notes due to brain fog or hand pain. The written notes can also be uploaded to a computer or mobile device. You do, however, have to purchase specific paper and ink cartridges that work with this pen (4). Online Banking (FREE) Most major banks have robust online banking platforms that can be accessed through an app. There are even some online-only banks. It is no secret that having chronic illness can get expensive, so financial management often becomes an important aspect of our lives. Online banking allows users to complete a ton of activities from home (a definite win - I would rather not use my spoons to go to the bank!). You may already monitor your account balances through an online banking app, but you can also do a host of other activities including depositing checks, paying bills, transferring funds between accounts, searching past statements and transactions, and getting quick access to account information. You may not realize that most banks also have a tool to exchange money with individuals, similar to Venmo (8). As an independent contractor, I am paid through these types of platforms so I do not have to worry about waiting for checks, or setting up direct deposit. Media & Entertainment Dysautonomia can keep us at home more than we would like, especially with COVID-19. These technologies can help us stay entertained and connected: Streaming Services (FREE - $$) Most of us take advantage of streaming services to provide some entertainment when all we can do is curl up in bed. Since chronic illness is expensive, it's critical for many of us to find free or cheap entertainment. Here are some options: Free Streaming Services (9): Peacock Free - NBC's free streaming service with shows like Parks and Recreation Crackle - Has original shows and a nice movie collection Vudu - Best for movies IMBDtv - Free with a Firestick or Amazon Prime Tubi - Has a "Not on Netflix" section Pluto TV - Has some live channels Sling Free - Has some live channels & on-demand movies Xumo - Access to live news and sports Youtube - A lot of free content, including DINET's channel! Free Trials (10): HBO MAX/HBO NOW - 14 day trial, then $14.99/month Hulu - 30 day trial, then $5.99 - $11.99/month (Students get a 3 month trial of Hulu, Showtime & Spotify Premium, then $4.99/month for all 3) Prime Video (with an Amazon Prime membership) - 30 day trial, then $13/month (Students get a 6 month trial, then $6.49/month) Netflix - 30 day trial, then $8.99 - $15.99/month Disney+ - 1 year free subscription with most Verizon accounts, then $6.99/month (Disney+, Hulu & ESPN+ all available for $12.99/month) Sundance Now - 30 day trial, then $4.99/month YouTube Premium - 30 day trial, then $11.99/month ($6.99/month for students) Note: These offers were in effect September 2020, they may change depending on when you read this article. Subtitles (Free) All the major streaming services and live TV options include subtitles. I find that my brain fog can impact my ability to keep up with shows, but subtitles provide a combination of both hearing and seeing the dialogue that helps me process it better. Podcasts & Audiobooks (Free - $) Sometimes vision disturbances can make it difficult to watch TV or read books. On those days, I like to lay with my eyes shut while listening to a podcast or audiobook. Podcasts are free and they cover every topic you could imagine. They can be accessed through built-in apps on most smartphones. Many local libraries also give members access to a digital library. Contact your local library for availability and instructions to set up. My library works through an app called Libby and I can "check-out" eBooks and audiobooks on my phone. Just like the library, you may have to be on a wait-list for popular titles, and you "return" the book after a specific amount of time. Also just like the library, access is completely free! Alternatively, Audible offers a collection of audiobooks and has good reviews. You can get a 30 day free trial, and it will cost $7.95 - $14.95/month after that. Virtual Art (FREE - $$$) We've witnessed the amazing creative talent in the dysautonomia community, but we also know that setting up, using, and cleaning up art supplies may require spoons you don't have to give. We don't want that to keep you from your creative expression, and there are a number of artistic apps that can be used on a tablet with a stylus to create beautiful works (11). Many of them are free or low cost, such as the apps listed here, and they range to more expensive products like the Adobe Creative Suite ($52.99/month and $19.99/month for students). Virtual Learning (FREE - $$) The type of virtual learning we discuss here is not necessarily for accreditation, but rather to build a skillset or learn something new that has always peaked your curiosity. Duolingo is one of my favorite apps to pass the time when I want to feel like I am expanding my mind. You can learn a number of languages using the app, it is very low pressure, and all of the learning activities are designed as games. Also, it is completely free. Skillshare offers courses on virtually any topic you can think of from business skills to candle making. Some courses are free, and a monthly subscription is $19.99. MasterClass is similar to Skillshare with the primary difference that all the classes are taught by well-known figures. A monthly subscription is $15, and select classes are available for free through MasterClass Live. Virtual Outings (FREE) Understandably, social distancing and quarantining for COVID-19 have evoked some complicated emotions in us. On one hand, it is great that more and more resources are becoming accessible from home. On the other hand, it hurts that these resources only became available when the non-chronically ill population needed them to survive COVID-19 quarantine. Nevertheless, one of the forms of entertainment that have recently become accessible to us are virtual outings. Many museums, including the Smithsonian and the Louvre offer digital collections and virtual tours, and science/outdoors organizations like NASA and WildEarth have live streams. This is a well-thought list of a number of virtual outings. Live concerts, musicals, and even music festivals are now also offered online. Here is a great list of different streaming options. Many artists are sharing live concerts on their social media, so look up those musicians you love! Connection (FREE) Most of us have been familiar with virtual friendships long before COVID-19, so don't forget the power of connection, especially when things get tough. We now have a ton of options from traditional phone calls to Zoom, Facetime, Skype, and social media. Forums, such as the DINET forum, can be great places to find support and connection for living with chronic illness, and there are even social gaming apps, like Houseparty, to play live virtual games with friends. Around the House Amazon Alexa ($$$) Voice-activated virtual assistants, like Amazon Alexa, can be used to make life a little easier with chronic illness. One of our members feels safe at home because she can have Alexa call her husband or emergency services when she falls (11). If you struggle with movement, strength, or pain in your hands you can use Alexa through voice activation to set reminders, timers, alarms, add to your shopping list, set a calendar appointment, check the weather, or even do an internet search (12). Smart Thermostat ($$$) Since temperature regulation can be a difficult symptom for many of us, a smart thermostat may be a great option to easily manage the temperature of your home while minimizing electric costs. One benefit of these thermostats is that you can change the temperature from your smartphone so that you do not need to get out of bed on a tough day, or you can change it on your phone when you are out so it is at the desired temperature when you get home (12). Smart Lighting ($ - $$$) Smart lights and plugs can help make your space more accessible. They can be operated from your phone so that you can turn on lights in a room before you enter, or before you get out of bed. You can even dim them from your phone if bright lights trigger symptoms (12). Electric jar and can opener ($-$$) This is one of those overlooked devices that can be a huge help. Sometimes I don't have the strength to manually open jars or cans when I am in a flare. It is these times that I am also looking for simple, easy to digest meals, and a lot of those, such as soup, come in cans. An electric can/jar opener is a fairly cheap gadget that can preserve those last spoons for more meaningful activity. Tile ($$ - $$$) If brain fog causes you to misplace important items frequently, you may want to consider Tile. You can add a tile to your phone, wallet, keys, or even medication box. Using the phone app, you can ring Tile so you can find any misplaced items. You can also click the Tile square twice to make your phone ring even when it is on "silent"! Waterproof Doorbell ($) One of our members installed a waterproof doorbell in her shower so she can ring it when she needs assistance (13). We thought this was a pretty clever adaptation! Meal and Grocery Delivery (FREE - $$$) There are a plethora of meal and grocery delivery services available these days. There are even options for dietary restrictions, such as vegan or gluten free. Many options send pre-portioned ingredients and recipes to make cooking easier, while some even provide ready-made meals. In addition, many grocery delivery services are being offered for free due to COVID-19. Resources Article Citations Wyant, P. (2018, September 24). 12 Products People with POTS Swear By. The Mighty. https://themighty.com/2018/09/pots-dysautonomia-treatment-products-coping Apple Watch Healthcare. (2020). Apple. https://www.apple.com/healthcare/apple-watch Fitbit Health Solutions. (2020). Fitbit. https://healthsolutions.fitbit.com/somuchmorethansteps Assistive Technology and Devices: High Tech and Low Tech Solutions for Life with Dysautonomia. (2019). Dysautonomia Support Network. https://www.dysautonomiasupport.org/assistive-technology Menchaca, D. (2020, February 20). 5 Symptom Diary & Health Journal Apps. Teamscope. https://www.teamscopeapp.com/blog/5-diary-apps-for-tracking-symptoms Wyant, P. (2017, August 31). 17 Apps That Make Life Easier When Brain Fog Takes Over. The Mighty. https://themighty.com/2017/08/apps-brain-fog-organization Keys, A. (2018 August). Self-care: Why it Deserves a Place at the Top of Your To-do List. DINET. https://www.dinet.org/content/information-resources/newsletters/self-care-why-it-deserves-a-place-at-the-top-of-your-to-do-list-by-amy-keys-r199 Pritchard, J. (2020 September 12). What is Online Banking? What to Expect When You Bank on the Web. The Balance. https://www.thebalance.com/what-is-an-online-bank-315204 Woo, K. (2020, July 16). The Best Free Streaming Services. Tom's Guide. https://www.tomsguide.com/best-picks/best-free-streaming-services Try the 27 Most Popular Video Streaming Services for Free (2020). Slickdeals. https://slickdeals.net/article/list/best-free-trials-popular-online-video-streaming-services/ Mathis, R. (2019, February). Technology and Chronic Illness. DINET. https://www.dinet.org/content/information-resources/newsletters/technology-and-chronic-illness-by-reanna-mathis-r212/ Patel, V. (2017, September 3). 7 Most Useful Smarthome Devices for People with Disabilities. Rolling Without Limits. https://www.rollingwithoutlimits.com/view-post/7-Most-Useful-Smart-Home-Device-for-Individuals-with-Disabilities Keys, A. (2019, February). Finding Workarounds. DINET. https://www.dinet.org/content/information-resources/newsletters/finding-workarounds-by-amy-keys-r214/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF Link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:4a8a1ffe-cfe1-4ba1-a136-154fe8d1972b
  8. By: Chelsea Goldstein, Dysautonomia Information Network If you have ever worked while living with a hidden chronic illness, you have probably struggled over whether or not to share your illness with your boss and coworkers. You've likely asked yourself questions such as: Should I tell my boss about my illness? Should I tell my coworkers? When should I tell them? Will I be treated differently once they know? These are big questions, and there is not one, correct way to answer them. The choice to disclose your health condition(s) at work is a personal one, and only you can decide the right course of action given your needs, your work environment, and your professional relationships (1). Nonetheless, there are some important things you should think about to make the best decision for yourself. The rest of this article will discuss the timing of disclosure, some fears you may have about disclosing, and tips for having the discussion. The Timing of Disclosing Your Condition(s) at Work If you are considering sharing your health condition(s) with your boss and coworkers, an important factor to think about is when you will share this information with them. There are pros and cons to disclosing your condition before you hired, right after you are hired, or once you have worked in your position for some time. Before You are Hired Pro: Disclosing your condition(s) before you are hired ensures there are clear expectations and understanding on all sides. This can help you establish needed accommodations from the beginning, and limit worry about being able to perform specific job duties. For example, if a job has strict, frequent deadlines and your symptoms flare unexpectedly, then an honest discussion about adaptions could prevent issues later on (1). Con: Many people with invisible conditions worry that they may not get the job if they disclose their illness in the interview (1). While it is illegal for employers to discriminate based on disability, some people have reported that they were refused jobs on false pretenses. Others have said that sharing their illness during the interview was a way to weed out the employers the wouldn't want to work with, anyway. It is an unfair and difficult situation. Right After You are Hired Pro: Some people find that disclosing their health condition(s) before they impact their job performance is ideal. This prevents discrimination during the hiring process, but it also promotes understanding if your health impacts your job later on or creates any safety concerns (1). You may want to allow yourself time to adjust to the job before you disclose, so you have a better idea of what accommodations you may need, and a stronger understanding of how your boss and coworkers may react. Con: Some people fear that their boss will feel "tricked" if they disclose their condition(s) early on in a position, and may even fear that their boss will treat them poorly in retaliation. If you get to know your boss a little bit before you disclose, you will have a better idea of how they may react. If your boss does react poorly, remember that it is your right to withhold your health information during an interview. When Your Health Interferes Pro: You can be in a tricky situation if you have not disclosed your condition(s) at work, but your health starts to interfere with your job. Even if you have fear about sharing your illness, many people feel relief once they disclose because they do not have to keep jumping through hoops to perform their job duties. In fact, many bosses are also relieved to learn there is a reasonable explanation for changes in job performance, and it's not due to a lack of engagement or worse (3). Con: You may be making your job more difficult, and your health worse, by trying to hide your illness at work until it becomes an issue. Some people also fear that their employer may be angry that they did not disclose their illness earlier. If this is the case, you may be less protected, legally, if you withheld your condition from your employer for some time (1). Addressing Your Fears About Disclosure It's normal to fear sharing your illness at work. 1. Will my illness be used as a scapegoat at work? Some people fear that once their bosses and coworkers know about their illness, they may feel like they are under a microscope at work. Will people blame any small slip or performance issue on my condition(s)? While this could happen, it is more likely that your boss will not treat you much different, and they may even be relieved to have an explanation for some changes in performance (1). 2. Will my coworkers just think I am trying to get special treatment? This is another common fear, especially when your accommodations may include coveted job perks like working from home part-time or a private office to manage your symptoms. However, many people report that employers usually try to be accommodating and coworkers are often understanding (1). You may even be surprised to find that some of your coworkers are also living with invisible conditions, or have a loved one with a chronic condition, and may have understanding for your situation. Also remember that you are not required to disclose your illness to coworkers if you believe it would be better to keep that information between you and your boss, only. 3. Will people judge me or treat me differently once they know about my condition, especially if they don't understand it? Unfortunately, many of us with poorly understood conditions, such as dysautonomia, or stigmatized conditions, such as anxiety, have experienced unfair reactions, like people telling us we are being dramatic, and viewing us as less-than-human. Because of these experiences, you may fear that your boss and coworkers will treat you poorly once they learn about your condition. Some people even fear being labeled unfit for their jobs and fired, despite ADA protections (1). As mentioned before, many bosses will find this news a relief if your recent job performance has been slacking. Learning that you have a health condition that they can accommodate may be much better than what their imagination has conjured (3). While you are not obligated to be the educator for your illness, it can also be helpful to share information about your condition(s) with your coworkers and boss (1). You could share pamphlets from DINET.org, or offer to answer questions about your condition at an upcoming meeting. Finally, remember that people will likely treat your condition(s) the same way you do, so try to remember that you are a strong and complete person who has been made stronger by your experiences with illness. If you convey this energy, people will probably send it back to you (1). Tips to Disclose your Condition(s) at Work So you've made the decision to disclose your health condition(s) to your boss. It is a tough choice, and you should be proud of yourself. You may, however, still have some anxiety about how to approach this discussion. These tips may help. Decide who you will talk to. Who are you planning to disclose your illness to? Some people suggest reviewing the employee handbook and reporting your condition in accordance with the policy on disclosure. Oftentimes, this may mean talking with Human Resources first. The benefit of discussing your condition with Human Resources is that they can be knowledgeable and experienced in this area, especially in larger corporations (1). Others say that you should start with your direct supervisor, especially if your condition has, or will, impact your interactions with them. If you aren't comfortable talking to your supervisor or HR just yet, consider talking with a trusted coworker to get feedback (2). The right course of action may depend on the culture of your work environment. Is it a formal corporate setting with clear policies? Do you work in a smaller organization with fluid channels of communication? How is your relationship with your supervisor? Just remember that your employer is only allowed to share your health information with others to make necessary accommodations (1). Know your job well. Once you decide who you will share your illness with, you need to think about what you will say to them. Often, conversations about tough subjects can be the most successful if you prepare and put some thought into potential solutions. One strategy is to closely review your job description and identify the specific tasks that are challenging. Make sure you can explain exactly why they are difficult for you with your health condition, and come up with a reasonable accommodation for the task before the conversation with your boss (4). Employers tend to appreciate solutions-oriented people, and taking the initiative to think of accommodations demonstrates you are team player (2). You could also use your job description as a tool to facilitate a conversation with your employer about essential job functions versus menial job functions (4). Are any of your menial job functions causing a lot of difficulty? Are these tasks that could be dropped or exchanged with another coworker? Keep it professional. Living and working with an invisible illness has, no doubt, been an emotional experience for you. I know that I have come home many evenings from various jobs, collapsed on my couch, and cried out of desperation - how can I keep doing this day after day?? While it would be nice for everyone to understand just how difficult it can be to work with chronic illness, disclosing your condition to your boss may not be the right time to get emotional. In fact, it may serve you to try to stick to the facts. You don't want your emotions to make your employer think your illness defines you, or that you cannot handle your job (2). By remaining professional, you send the message that your health does not define you, and you are capable of handling a difficult situation well. Often, your employer will see this as a reminder of why they hired you in the first place - you have been a valuable asset despite living with chronic illness (4). Get support from your doctor. A letter from your doctor to explain how your condition impacts your work could be very helpful in conveying the seriousness of your health condition(s) to your employer (1). Talk with your doctor about your daily job tasks, and some of the work-arounds you have to do just to keep up. A doctor's record of these work-arounds, and how they affect your health, could be especially strong evidence for needed accommodations if you have a reluctant employer. For example, one employer denied an expensive accommodation to an employee because she had been completing her job thus far without it. She may have had a better experience if she had evidence from her doctor to indicate that she could not reasonably sustain her job and her health without the accommodation (2). Know the law. Unfortunately, not every employer is open and willing to discussing health issues and accommodations in the workplace. If you are not sure how your employer will react, it is always helpful to educate yourself on your rights as an employee living with a disability. You should be especially familiar with the Americans with Disabilities Act (ADA), and the Equal Employment Opportunity Commission (EEOC) may be another good resource. If you feel that your employer is not providing adequate accommodations, you can file a complaint with the EEOC and seek a "right to sue" letter. The complaint may be enough to resolve a misunderstanding, or it may be reason to involve higher-ups in the organization to get the accommodations you need. The EEOC will usually recommend that you and your employer try to resolve the issue with a third-party mediator. Discrimination cases are often difficult to prove, so it may also be helpful to make record of any incidents you wish to address (1). While it is always good to be informed of your rights, many experts advocate opening the conversation about your illness with the assumption that your employer wants to work with you. If you start the conversation by citing the ADA or mentioning other legal avenues, it may turn a would-be productive conversation into a hostile one. Employers often see discussions about legal matters as threats. However, the laws are there to protect you if you have already done all you can to approach the situation professionally (2). Resources Article Citations Pompilio, N. (2020, January). Should you disclose your illness to your employer? Brain & Life. https://www.brainandlife.org/articles/deciding-whether-to-tell-your-employer-about-your-condition-is/ Joffe, R. (2016, September 12). How do your disclose you live with illness at work? Working with Chronic Illness. https://cicoach.com/2016/09/12/how-do-you-disclose-you-live-with-illness-at-work/ Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/ Sultaire, J. (2017, December 8). Your rights at work: Navigating the workplace with chronic illness. Medium Chronicality. https://medium.com/chronicality/your-rights-at-work-navigating-the-workplace-with-chronicillness-2359e7dbb92f Additional Resources Disability Secrets. http://www.disabilitysecrets.com/ Job Accommodation Network. http://janweb.icdi.wvu.edu/ National Organization on Disability. http://www.nod.org Office of Disability Employment Policy - U.S. Department of Labor. http://www.dol.gov/odep/ US Equal Employment Opportunity Commission https://www.eeoc.gov/ But You Don't Look Sick. https://butyoudontlooksick.com/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:98bd9802-a0e0-4cba-89b4-3b7034d2a497
  9. By: Chelsea Goldstein, Dysautonomia Information Network If you are working and managing your chronic illness stop now. Take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. It is difficult for anyone to have a career and manage the responsibilities of life such as family, household tasks, and self care. Throw chronic illness into that mix, and anyone who can balance their health and a career is a superhero. Or magician. Maybe a bit of both. If you aren't working, but are managing your chronic illness, remember that taking care of your health is an important full time job. Stop, take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. Chances are you are doing a heck of a lot to make this world a better place (whether you realize it or not), and that is just as commendable as a traditional career. The rest of this article is for the people who are in typical work environments and need some ideas on how to make those environments more chronic-illness friendly. Adjusting Your Career to Fit Your Needs Consider adjusting your schedule. Offset Schedule. For many people with chronic illness, especially dysautonomia, certain times of day are the most symptomatic. For me, mornings are toughest. I need several hours to allow my body time to "calibrate" from sleep to an awake state. If you also have a tough time of day, talk to your employer about working around that time. Can you start work at 10am and work past 5pm? Can you take a longer lunch break and start early or stay late? One my previous employers actually liked the idea of me starting late and working past 5pm because it meant I could cover my organization's occasional evening activities. Work from Home. Working from home is becoming more and more common, and can be an ideal solution for people with chronic illness. If you do not currently work from home consider if your job has any responsibilities that can be accomplished from the comfort of your couch. In your PJs. Document how much time those responsibilities take each week, and approach your boss about the option to work from home while you accomplish those tasks. In all of my positions, I have tried to advocate to work from home on Wednesdays: this one work-at-home day gives my body a much needed rest midweek and helps me get to the weekend. Flex Schedule. Some companies may be open to flex scheduling, which loosely means that you are required to work a certain amount of hours per week and your employer is flexible about when you get those hours in. A couple of my past positions have allowed flex scheduling, and it has been very helpful in managing my health conditions. I can work longer hours when I am feeling well, and rest when my body is more symptomatic. However, flex scheduling can end up causing problems if it is not approached well. Here are a couple of tips to make it a sustainable accommodation for your health and career: Flex scheduling can mean different things to different people, so it is very important that you and your employer have a strong mutual understanding of what this means from the beginning (1). Create a document that you both review, and even sign, outlining the terms of what your schedule will look like to avoid any miscommunication issues down the road. Create a loose weekly schedule for yourself and make sure you track your hours well. Your schedule can be adjusted to accommodate your health, but it will provide a guide to ensure you do not overdo it (Hello, causing a flare because I worked a fourteen-hour day when I felt well), or underdo it (Wait, it's Friday already?!) Consider adjusting your responsibilities. Minimize Them. Take time to make a thoughtful list of all the tasks you do in your job. Then, identify the ones that are the most difficult for you to accomplish with your health. Are all of these tasks absolutely critical to your job? Try to eliminate the ones that aren't. Are there ways you could modify some of them to be more inline with your health? Share Them. Use that same list and think about your coworkers. Are there any tasks that could be accomplished more easily by your coworkers who do not have chronic illness? If so, you can offer to exchange these tasks with some of your coworker's tasks that might be more doable for you. You might discover a win-win situation (2). Change Them. If modifying your job duties is not possible, but you enjoy working at your company, consider transferring to a different department or position with a job description that is more inline with your health needs (2). Adjust Your Space Comfortable Chair. If you work in an office setting with a chronic illness, chances are the place you sit for most of the day has a big impact on your health. Identify your major symptoms to determine the best chair for you. Do you get frequent hip or shoulder pain? Do you feel dizzy when you sit up straight for long periods? Talk with your employer to get the right chair for you, or modify an existing chair with ergonomic accessories. Other physical aids. Record what a typical day looks like for you, and identify when you have the most trouble. What physical aids could help you through those moments? Would an adjustable desk relieve some pain? Would speech to text software help with your brain fog? Would blue light glasses minimize your daily headaches? (2). Make Yourself a Care Kit. Think about all the things that you could possibly need to get through a tough day at work, and make sure those things are stored in your office. My care kit always includes salty snacks, extra medications, a heating pad, an ice pack (in the office freezer), IcyHot, a reusable water bottle, electrolyte drink mixes, doggie poo bags for vomit, a pair of comfy shoes, a change of clothes, a blanket, a desk fan, and a collection of motivational quotes. When your work space just really does not meet your needs Perhaps, you have tried to adjust your work space to meet your needs, but it is just not working. Maybe the lighting is causing headaches, or your trip to the bathroom is too far, or you don't have a private enough space to take care of your health needs. Change Your Space. It may be time to talk to your employer about changing your work space. It can be scary to approach your boss about changing your work space. You may be afraid that your coworkers will think that you are trying to snag a more cushy office. Just remember that this accommodation is going to help you continue to be a good employee. Before talking to your employer, spend some time making a list of the most important elements of a work space you need to manage your health. Then highlight the ones that are absolutely necessary, and write a short justification as to how they will help you maintain your current position. Also identify how your current work space is not meeting those needs, and if there can be any modifications to that space. You may also want to do a little reconnaissance before you approach your employer. Are there any unused spaces in your building that would be better suited for your health needs? Employers may be more likely to grant your request if you present them with a solution. Or, are there any coworkers who may want to trade spaces with you? It may be that your coworker wants to be near your window, but you want to be closer to the bathroom. This could be a win-win situation. Access Additional Space. If you can't change your work space, you may want to ensure access to a space where you can retreat when your symptoms flare. Perhaps, your company doesn't have the exact work space you would like available. Even so, they are still required to make reasonable accommodations for your health needs so it may be time to get creative. Return to your list of elements of a work space that you need to manage your health. Which ones are not being met in your current space? Is there any additional space you can get access to, even occasionally, to address these elements? For example, being upright for long periods of time can be difficult for people with dysautonomia. Sometimes, fully reclining for short periods can restore blood flow to the brain and improve symptoms. I used to be in a shared office space without anywhere to lay flat. I worked with the office manager to reserve a small conference room for fifteen minutes a day, midday, so that I had a guaranteed time I could recline, and I kept a yoga mat at the office. You could also talk to your employer about reserving a close parking space so you can retreat to your car, when needed. Even a dark storage space could be a place to relieve a budding headache. Get creative. Workday care routine Create a self-care routine for your workday. Prioritize Nutrition. When you live and work with chronic illness, planning food, cooking, and packing lunches can be low on your priority list. However, you might also have specific dietary needs and good nutrition likely improves your health. Try to pack your lunch so you know you have good food to fuel your body throughout your workday. Meal prepping on the weekends can be a big energy saver throughout the week. Invest in food storage containers that have multiple compartments so that you just need to grab one each weekday before you go to work. If preparing food is just not possible for you, create a list of healthy, premade meal options that meet your dietary needs. This could mean perusing your grocery store on a weekend to identify nutritious and quick meals, making a list of good lunch options at local restaurants, and/or utilizing a meal delivery service. Get Physical. Research demonstrates that physical movement throughout the workday is beneficial, even for people with chronic illness. This is especially important if you spend most of your time at a desk. Make yourself move your body for a few minutes each hour, even if it is stretching your arms, legs, and fingers while seated at your desk (3). If you are someone who will forget to do this, set an alarm for 55 minutes past each hour until it becomes habit. Even more, many of us stare at screens all day and forget to "stretch" our eyes. The 20-20-20 rule is a great reminder to give your eyes a break throughout the workday. It states that every 20 minutes you should look at something 20 feet away for 20 seconds (4). Cultivate Your Mental Health. At times, work can be draining and stressful even if you love your job. Try to practice mindfulness when feel overwhelmed. Take a break to focus your mind on the present moment. What do you see? What do you hear? What do you smell? Continue this exercise until you feel a bit calmed down. By focusing on the present moment, we often realize that a stressful situation may not be as intense as we believe it to be and we are better able to manage that situation (3). You should also have a go-to activity that you can do during work hours to cultivate your mental health. Many companies have workplace wellness initiatives that offer group meditation, yoga, support groups, or wellness consultations. Take advantage of your company's offerings. You could also find a calming space near your office to take a walk, keep a gratitude journal, keep a list of calming quotes, or try guided meditation with an app, such as Calm. When Tips and Tricks aren't Enough Perhaps, you have done everything in your power to try to maintain your job and manage your health. Maybe you are in a severe flare and the adjustments you have made just aren't cutting it. Or your employer may be reluctant to grant accommodations. What now? Temporary Leave. You may consider trying a temporary leave to regain control over your health. Do you have any PTO or sick leave? I know it may be tempting to save your PTO for a vacation, but you won't enjoy a vacation if you aren't well. Also research your company's policy on extended medical leave. Knowing the policy will make you feel more confident in approaching your employer to take some time away from work (2). If you are considering taking a temporary leave, it may be helpful to be open about your health struggles with your coworkers, document how your job is making your health worse, and identifying the reasons why you think a temporary leave will help you return to work in the long run. If possible, it may be helpful to get some documentation from your doctor indicating that you need temporary leave to manage your health (2). Try to prioritize your health during a period of temporary leave. You may worry about finances if your pay is suspended, and you may be tempted to use this time to get things done around the house. Remember that if you do not try to reduce stress and care for your body during this period, you may not be able to sustain your job in the long run (2). Know Your Rights. Employers are legally obliged by the ADA to make reasonable accommodations for your health. The Americans with Disabilities Act (ADA) requires all employers to grant individuals with disabilities reasonable accommodations to perform essential functions of their jobs as long as the accommodations do not put undue hardship on the company (5). All of adjustments and modifications we have discussed in this article are considered reasonable accommodations for someone who needs them to complete their job duties, but some employers may be reluctant to grant them. Knowing your rights through the ADA could help you approach a difficult employer with confidence. Some companies have standardized process and forms to request accommodations. You should go through these channels. If your company does not have a formal policy, you can start with drafting a letter to your employer using this format. It may be helpful to include information about your medical conditions or a supporting letter from your doctor (6). Know that this process may take some time, and do not waiver from doing what is right to care for your health. Resources Article Citations Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/   Laurence, B. (2020). What is the difference between Social Security Disability (SSDI) and SSI? Disability Secrets. https://www.disabilitysecrets.com/page5-13.html Laurence, B. (2020). What are the rules and requirements for Social Security Disability cases? Disability Secrets. https://www.disabilitysecrets.com/the-rules.html Benefits planner: disability, how you qualify. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/qualify.html You may be able to get Supplemental Security Income (SSI). (2020). Social Security Administration. https://www.ssa.gov/pubs/EN-05-11069.pdf State disability insurance. (2019, May 17). Eligibility.com. https://eligibility.com/state-disability-insurance Benefits planner: family benefits. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/family.html#anchor3 Additional Resources Apply for Social Security Online. https://www.ssa.gov/disabilityssi/ Disability Secrets. http://www.disabilitysecrets.com/ Life After Work, When Chronic Illness Makes You Quit a Job You Really Love. https://creakyjoints.org/blog/life-after-work-when-chronic-illness-makes-you-quit-a-job-you-really-love/ National Organization on Disability. http://www.nod.org Online Lawyer Source. http://www.onlinelawyersource.com/social-security-disability/index.html NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:2a967798-3e0f-4e71-bed3-97b81419b970
  10. By: Chelsea Goldstein, Dysautonomia Information Network Living with chronic illness often feels like one big Catch-22. For example, we need to work to survive, but working can be so tough on our bodies that it causes precarious health. Many of us have left jobs we love as a result, but it's also in these moments that we need our reliable income the most to cover our medical bills and other expenses. If you can relate to this, you've probably had a roller coaster of a career path - like me - as you try to figure out just what job, exactly, will work with your body. One option is to consider disability, and only you can decide if that is the right path for you. Our article, Cutting Through Red Tape: What to Consider Before Applying for Disability, may be a helpful read. Another option is to get back out into the career world. But, how do you do that in a sustainable way so you don't end up overworked and in poor health again? There is no perfect career for people with chronic illness, but there are some strategies you can use during your career search process to figure out what may be the best option for you, chronic illness and all. Preparing for Your Job Search Consider taking these steps BEFORE you apply to jobs. 1. Start with a Strengths-Based Approach. This approach comes from social work and, like the name, focuses on your strengths. It helps you remember that you are resourceful and resilient in difficult times because you have identified the things you do well, and know you can utilize those skills when needed. It also helps you take control of decision-making in your life (1), even when chronic illness forces you to get creative. Start this step by making a list of what you love, and another list of what you are good at. Where is the overlap? Focus your job search there (2). 2. Be realistic about your needs and limitations. It's great to have goals and passion, but you may find a job is unsustainable if you pursue it without also considering how it may impact your health. I have downplayed my health needs far too often just to get the job, which never ends well. Instead, a helpful exercise is to walk through your current day and write down all the things you do to manage your health. Record things such as how often you take medications, dietary habits, how much rest you need, etc. Then, think about all the activities that may occur in your ideal career, and be honest with yourself about any limitations you may have. Can you drive yourself to work everyday? Can you sit or stand for eight hours? How might harsh office lighting impact your symptoms? Your answers to these questions will help you have a stronger understanding of the types of work that you can sustain long term (2). This is a tough step, but try to remember that you are doing this exercise to set yourself up for long-term success. You may find that your dream job, as you have pictured it, isn't a realistic option. However, this exercise will also help you think about accommodations you may need to sustain that job, or how to find a similar or modified position that does work for you. 3. Do an initial job browse. Notice, I did not call this step a "job search" because it is simply for getting an idea of what is out there. Your goal, here, is to start to figure out what types of jobs align with your skills, passions, needs, and limitations. You should try to answer a few general questions: What types of environments are typical for jobs that match my strengths and skills? Are these environments conducive to my health? Could reasonable modifications or adaptions be made to these jobs? This is an opportunity to think about what you want your job to look like before you get focused on specific positions. It will help you to protect the things that you know you may need, such as a flexible schedule or a work-from-home option (2). 4. Don't be afraid of your finances. Money can be stressful, especially when you live with chronic illness. Perhaps you feel pressured to get a job, any job, because finances are tight. Try to remember that taking time to find the right job is an important investment in your future. If you take a position that you can't sustain with your health, it ends up costing more in the long run. Instead, spend some time with your finances, and consider making a minimum monthly budget that is not unrealistically tight, but is not excessive, either. This will give you a minimum amount of compensation you can take for a position. Knowing what you need for financial independence is empowering, and reminds you that you have value in the workplace despite your health. 5. Update your LinkedIn and Resume. I once received dating advice that went something like this: don't just sit there wondering if they like you. Instead, ask yourself if you like them. We often fall into a similar trap of focusing too much on "selling ourselves" when we are looking for a job. Don't forget that you get to decide if the job is right for you, and it's okay to say no if it's not. Your resume is often the first thing a potential employer sees, so it is important it is updated and relevant to the position. However, it is also critical that the language reflects what you are truly looking for in a career. Some experts even advise including relatable past experience. For example, if you are looking for a flexible position include any flexible working arrangements you had in the past to demonstrate they were effective. You can also describe any gaps by including, "Personal leave of absence: Will explain in person" (2). 6. Use your network. While it is completely acceptable to apply to jobs through traditional methods, you should also consider reaching out to your network as much as possible. It's probably wider than you think and can include friends, family, teachers, former employers or coworkers, friends of friends, and even local business owners. The more you talk about your search, the more people will be aware you are looking. When they come across something that fits what you want, they are likely to recommend you. A personal recommendation can go a long way. Also, talking about your job search with chronic illness can be a nice way to get support and confidence to continue. It can be daunting to find the perfect job when you need a lot of accommodation, but the more you talk about it the less scary it will become. There will be highs and lows during your search, and having a support network will help you get through them (2). During Your Job Search Congratulations! You did a lot of hard work to prepare for your job search. Getting real about your health, needs, and limitations is a difficult process, but one that will serve you in the long run. As you embark on your job search, remember to continue to keep your health as your top priority. 1. Determine what work environments will work for you. Could you sit in an office for eight hours a day? Would being on your feet most of the day be reasonable for you? What about working outside? Only you can answer these questions, but all of these environments can be difficult for people with dysautonomia. You may want to consider jobs that have shorter shifts, can offer space to rest as needed, or are willing to offer flexible scheduling and location options. Work-from-home positions are also increasing. This may be a good option for you because you can limit the energy you need to spend "getting ready" for the day and commuting to an office. It also allows you to control an office (or couch) environment that may be more ideal for your body. Another consideration could be working multiple part-time jobs or working as an independent contractor. There are certainly pros and cons to this type of career path. It can provide you a lot of control over your work schedule and location, as well as give you a variety of work environments so you don't have to spend eight hours doing the same thing. You could even intentionally schedule a break in the middle of the day to rest and recover. However, this work can be less consistent, and usually doesn't offer benefits like medical leave and health insurance. 2. Look in the right places. As mentioned above, starting your job search within your own network can be surprisingly successful. Another option is a job finding service called Chronically Capable. The founder lives with chronic illness, and aims to match other individuals with chronic health issues with appropriate jobs. It is free for job seekers to join. 3. Decide when you want to disclose your health issues. Refer to our article, Coming Out: What to Consider Before You Disclose Your Health Condition at Work, for some tips on how and when you may want to disclose your health condition to your employer. If you do decide to share it during the interview process, you should prepare what you would like to say and try to remain professional and unemotional (3). 4. Refer to your lists of skills, needs, and limitations frequently. These lists will help keep you focused on jobs that will actually work for you. Remember that everyone has limitations. Limitations include the skills we don't have to complete a specific task, as well as any activities that may require more energy or concentration than we can commit (2). Untraditional Job Options Perhaps, you've gone through all the steps above and you just aren't finding a good job match for you. It isn't fair that you have to consider your chronic condition in an already difficult and stressful process, but you may have some alternative options. 1. For educators, and people skilled at explaining things. There are multiple services that seek online tutors in all types of subjects. In the past, I was able to bring in most of my income by tutoring through Wyzant. If you have a Master's degree, colleges are often looking for adjunct professors to teach online courses. If you aren't interested in teaching traditional subjects, but have a specific skill you want to share, you could even consider creating your own course on Teachable. 2. For creatives. If you are good with words, you may consider being a freelance writer. Several writing opportunities can be found here. You may also want to think about specializing in a specific type of writing such as copywriting, web content, or grant writing (4). Graphic design is another option, even if you don't have a degree in it. Many graphic designers are self-taught and the median salary is around $46,000/year (5). Finally, crafty people can sell their goods or designs on platforms like Etsy or Conscious Crafties, an online marketplace that sells goods made by people with chronic illness and disability. 3. For caretakers. Being a caretaker for pets, children, older adults, and houses may be physically demanding, but you can often make modifications to these types of arrangements. If you are caring for your own children, you could consider babysitting another child in your home. You could also use Rover to find pet sitting arrangements that may not require long walks, or be otherwise too physically demanding. House sitting could be an ideal situation to earn a little extra money, especially if you have another job you can do from anywhere. If you are gifted with empathy, or a good motivator you could pursue a career in coaching. You may want to get some training, and you could even consider specializing in strategies for living with chronic illness (4)! 4. For the business-minded. Several large companies, such as Amazon, American Express, and United Healthcare offer remote positions in sales, customer service, IT, and engineering. These could be great options for people who are gifted marketers or tech-savvy individuals because these companies usually offer full-time work with decent benefits packages (6). These companies are a good place to focus your search if you need to work from home, but still want such securities. 5. For professionals. Perhaps you have training in research, medicine, law, or administration, but are not able to engage in a traditional career in these fields due to your health. You can still use your skill set with a little creativity. Transcribers are always needed, and if you have a familiarity with medical/legal/research jargon, this may be a good match for you (4). Remote administrative positions are also increasingly popular, especially among new businesses. Resources Article Citations Stoerkel, E. (2020, April 23). What is a strengths-based approach? (Incl. activities and examples). Positive Psychology. https://positivepsychology.com/strengths-based-interventions/ Kulkarni, N. (2019, April 8). Living with chronic illness. Finding a job that works for you. Idealist. https://www.idealist.org/en/careers/chronic-illness-finding-job Joffe, R. (2019, October 27). Live with chronic illness and returning to the workforce? Working with Chronic Illness. https://cicoach.com/2019/10/27/live-with-chronic-illness-and-returning-to-the-workforce/ Hanna, H. (2017, July 25). Best work-at-home jobs for people with chronic illness. The Work at Home Woman. https://www.theworkathomewoman.com/jobs-for-people-with-chronic-illnesses/ Hanna, H. (2016, September 1). How to work from home as a graphic designer. The Work at Home Woman. https://www.theworkathomewoman.com/graphic-design/ Davidson, J. (2017, July 6). These companies have remote jobs that may be great for people with chronic illnesses or disabilities. The Mighty. https://themighty.com/2017/07/remote-jobs-companies-disability/ Additional Resources Chronically Capable. https://www.wearecapable.org/ Conscious Crafties. https://www.consciouscrafties.com/ Job Accomodation Network. https://askjan.org/ National Organization on Disability. http://www.nod.org The Work at Home Woman. https://www.theworkathomewoman.com/ Working with Chronic Illness. https://cicoach.com/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:691b7dfa-946a-4a15-91b1-fcd6fd832914
  11. by Chelsea Goldstein, Dysautonomia Information Network Your research on assistance animals may have you feeling confident that a service dog could help you live more independently and sustainably. If this is you, rock on and read on. If you are still unsure of whether a service animal is the right fit for you, consider reading It's Doggone Confusing: Understanding Service Animals and Emotional Support Animals (ESAs) before continuing this article to better understand if a service dog is your best option (but still, rock on). Remember that a service animal is trained to help an individual with a disability with specific tasks related to their disability. For example, a dog may be trained to sense pre-syncope and alert their handler so they can get to a safe place and recline. If you are ready for a service dog, it can be overwhelming to start the process. We have all heard how expensive and time consuming it can be to get/train a service animal, so it is important that you understand your options to determine which one is best for your needs, resources, and abilities. What to expect Understanding the process can minimize future frustrations. Training. Service animal training is primarily focused on two major qualifications that are required by the ADA: 1) the animal can assist the handler with specific tasks related to their disability, and 2) the animal can remain calm, focused, and well behaved in a variety of stimulating public settings (1). The ADA, however, does not specify how animals should receive such training, and there are not any federally required certifications or tests to qualify service animals. This lack of federal regulation is a double-edge sword: it protects the rights of individuals with disabilities, but it also makes it easier for others to abuse the designation of service animal, which can be dangerous if the animals are not properly trained. It is important that you take service animal training seriously to ensure you can safely and responsibly work with your dog when out and about. Time Commitment. Depending on the route you choose, the time commitment of getting and/or training a service animal varies. However, expect that it will take a significant amount of time and focus to ensure you and your dog have a productive and sustainable working partnership. Even if you get an already-trained service animal, the certifying organization often requires that you stay on premise for several weeks to months for intensive joint training (2). Expense. Service animals are also known to be expensive. Costs may vary, but an already-trained service animal could cost upwards of $25,000 (2). While this is an extraordinary expense, there are ways to reduce it. Many organizations will help procure financial support that drastically reduces, or even eliminates, the final cost. More cost-effective solutions include getting training for an animal you already own, or even training your animal yourself. Goals. As mentioned previously, there are not any federally-mandated certifications or tests for dogs to become service animals. However, the rights of the handler are only upheld if the dog is trained in specific tasks that support the handler's disability, and if the dog is well-behaved in public. A number of organizations determine readiness of a human and animal pair to work together in public by administering a Public Access Test (developed by the organization or a coalition of organizations). Assistance Dogs International (ADI) is one such coalition that has established minimum standards for training and testing. Many reputable organizations use their Public Access Test. Upon passing the test, these organizations often give the human and dog team some type of certification. Beware that training organizations vary widely, and a good place to start your search may be this list of ADI accredited organizations that can be found on their website. Getting a Service Dog: Option 1 Perhaps the most well-known way to acquire a service dog is to purchase a dog that has already been selected for service work and trained by a reputable organization. The Process. Many people consider buying a service dog from a reputable training organization. This is certainly a good option to ensure that your dog is professionally trained with stringent standards. It also provides you with a lot of guidance on how to work with your new animal. However, the process of getting a service dog is more complicated than simply picking one out (2). The actual steps may vary by organization, but the process generally involves interviews, assessments of your needs, and joint training with your new service animal. For example, one well established organization requires interested handlers to complete an initial and full application. Then they have a phone interview and fill out medical paperwork, followed by an in-person interview. Only then are they accepted as a handler. Even after this arduous screening process, they may be put on a wait list until a dog with the skill set and temperament to meet their specific needs is available (3). Finally, the handler will usually be required to stay on-site for several weeks to a month to complete joint training with their dog (2). These steps may seem overwhelming, but they are there to ensure that people getting service animals are fully supported in their needs, and that the training can be sustained and helpful to the handler for many years. Beware of any training organizations with minimal screening requirements. Pros. One of the major pros of this option is that the dogs are selected or responsibly bred specifically to be service animals. These strict selection and breeding criteria provide strong probability that the animals have the right temperament for service dog work, and are receptive to training. Even still, 50-70% of service dog candidates do not pass testing and certification. While this drop-out rate may be high, it also means that only the most well-qualified dogs are the ones being matched with handlers (1). Do not worry, there are often long waiting lists to adopt service dog drop-outs because they are still very well trained and good with people. Additionally, these dogs are generally chosen for service training as puppies, which means that they will not have any negative behaviors due to improper past training that need to be addressed. Cons. This is usually the most expensive option for getting a service dog. While it can cost around $25,000, there are often avenues for financial aid (1). Additionally, some potential handlers reported that they were deterred from this option because they were on wait lists for over two years and still weren't matched with dogs. Other people have said that they did not have enough time to fully bond with their dog before leaving the training facility, likening the first year of living with a school-trained service dog to a new marriage: there is a lot of adjustment before you can effectively work together (4). Getting a Service Dog: Option 2 Another option is to take your own dog to a professional service dog organization for training. The Process. Sometimes pets can make excellent service animals. This may be an appealing option if you already own a dog that shows promise as a service animal, and the thought of adding another dog to your household seems a bit overwhelming. First, you should honestly assess your pet's temperament to decide if they will be suitable for service dog work. Service dogs need to remain calm, even in unfamiliar settings, have a willingness to please you, should be able to learn and retain information, should be reliable, and are socialized to many different environments (1). Many companies that train service dogs will do a temperament assessment to ensure the animal is a good fit for their program (2). Again, there are no federal mandates for service dog training, but many reputable organizations will require about six months to complete training courses and prepare for a Public Access Test. Training is often administered in small groups of dog and handler teams, with support from the trainers to reinforce the skills at home. Some organizations also offer one-on-one training (1). The training program that works for you is highly dependent on your expectations, budget, and needs. Take some time to contact several reputable organizations in your area, if available, and discuss what type of programs they offer before making a final decision. Most reputable training programs will be considered completed when you and your dog pass a Public Access Test. Pros. These professional programs often emphasize training for the human-dog team, meaning they recognize that training for the human is just as important as canine instruction to ensure that the pair is successful after the program. They also may include periodic follow-up training to brush-up on skills and address any issues that may arise (1). Additionally, this option usually costs around $5,000 to $10,00 in the US (2). While this is still a large sum of money, it is significantly less than purchasing an already trained dog. Finally, the emotional bond and trust you have already developed with your pet will be invaluable in a successful training experience. Cons. The biggest risk in this option is that there is no guarantee your dog will pass the Public Access Test. If your dog does not pass the first time, the responsible thing to do would be to continue training your dog and take the test again, or choose another option to acquire a service animal. This can result in additional costs. This is why honestly assessing the qualities of your dog before you pay for training is essential. We all know that our own dogs are the most adorable, and most perfect, and most lovable. But if they get extremely excited anytime they see a ball or other dog, they may not be the best fit for service work. This doesn't mean they're any less lovable, they're just not a good fit for the job. Getting a Service Dog: Option 3 Finally, training your own service dog is an option for individuals who are willing to commit a lot of time and effort. The Process. Once again, the ADA does not require a specific type of training for service dogs. This means, you can do it yourself if you are up for the task (1). Similar to the option above, you need to make an honest and thorough assessment of your pet's temperament and qualities. What characteristics would make them a good service animal? What qualities or behaviors may detract from service work? Can your training address those non-serving behaviors? Take your time in the assessment phase. Some experts report that the greatest mistake handlers make is trying to force an unsuitable dog to become a service animal. This can often set the handler up for unnecessary frustration as they fail to train an animal to do tasks they're just not suited to do (5). Remember, that a great pet does not necessarily make a good service animal. For example, a playful and friendly pet may get too distracted from the service task at hand when in public. Similar to the other options, this process will take time. Experts recommend starting with basic house training, such as sit, stay, and lay down commands, and teaching your dog to eliminate in specific locations on demand. Then, you should work on socializing your animal in a variety of public settings while encouraging them to stay focused on you and the given task. Finally, you should introduce specific disability-related skills that you would like your dog to learn. Pros. One obvious benefit of this option is cost. While there is no upfront fee to train your own animal, there are often extraneous costs to consider such as training books and videos, treats, training supplies, and your time and energy. There are, however, a plethora of resources available online to guide training (2). The American Kennel Club (AKC) Good Citizen Program provides several resources for basic training, and your pet can even be evaluated on ten major tasks. Finally, training your dog yourself provides you with a lot of control and understanding about working with your animal out in public. You will, arguably, learn your dog's quirks and behaviors better than you would if they were trained by someone else. Cons. This avenue can be time consuming, energy draining, and frustrating. But also rewarding. So, in addition to assessing your pet's temperament, you should honestly assess if you feel prepared for the job. If you have limited experience working with animals you should be prepared to do a lot of learning, or consider another avenue. There will be less outside support in this option, so it is important you do your homework with reputable sources to ensure you aren't accidentally reinforcing poor behavior in your animal. Take Home Points Training or getting a service animal is a big step. Here are a few things to remember... Make sure your animal is properly trained. Even if you train your dog yourself, you should consider getting professional input at some point. When looking for organizations to train, or assist in training, a dog don't be afraid to ask the trainers several questions before committing your time and money to an organization (1). A properly trained service animal is an investment in your future. If done right, it can dramatically improve your quality of life (2). However, a poorly trained or improperly represented service animal poses danger to the public and damages the reputations of service dog handlers. This statement from the AKC outlines why the misuse of service dogs is so detrimental to people living with disabilities (1). These options are not mutually exclusive. Your responsibility as a potential service dog handler is to thoroughly review your training options and make an informed decision about the best avenue for you and your animal. You may decide that a combination of approaches is the best fit for your needs and budget. For example, several handlers have reported that they trained their dogs in basic tasks on their own, and they sought professional support for more advanced work. This can dramatically reduce the costs and time commitment of professional training, while also ensuring you have a strong working bond with your dog (4). You will need support throughout the process, especially if you train your own dog. Training a service animal can be emotional and physically taxing no matter what route you take. You may want some professional help if the idea of training your animal yourself is overwhelming. Even if you manage most of the training on your own, it is important to have an outlet for emotional support and feedback. The DINET forum is always a great space for connection, and this Facebook group is dedicated to discussion about service animals for people with POTS. You should also ensure that any housemates are onboard with supporting your training. They need to understand and reinforce the behaviors and tasks you are teaching your dog, and NOT encourage poor behavior. This can be confusing to the animal and jeopardize your training process. Make sure you are working with a reputable organization. The ADI accredits organizations around the world that meet their minimum standards and use their Public Access Test. This list of ADI accredited trainers may be a good place to start your search. Organizations that are members of IAADP have also met a set of minimum standards for service dog training. Whatever organization you choose, make sure that you ask a lot of questions and feel comfortable with the organization's process before you commit. Resources Article Citations Karetnick, J. (2019, September 24). Service dogs 101: Everything you need to know. American Kennel Club. https://www.akc.org/expert-advice/training/service-dog-training-101/ Driscoll, E. (2019, June 4). The ins and outs of owning and training a service dog. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-ins-and-outs-of-owning-and-training-a-service-dog-r222/ Apply for an assistance dog. (2020). Canine Companions for Independence. https://www.cci.org/assets/files/apply-for-an-assistance-dog.pdf Furlong, R. (2006, December 1). Training your own service dog. New Mobility. https://www.newmobility.com/2006/12/training-your-own-service-dog/ Froling, J. (1998). Finding a suitable candidate for assistance dog work. https://www.iaadp.org/type.html Additional Resources Assistance Dog International. https://assistancedogsinternational.org/ American Kennel Club. https://www.akc.org/ Canine Good Citizen Program. https://www.akc.org/products-services/training-programs/canine-good-citizen/ Service Dogs for POTS Facebook Group. https://www.facebook.com/groups/110152023042832/ The Dog Alliance. https://www.thedogalliance.org/training-your-own-service-dog Dog Owner. https://www.dogowner.co.uk/ Lean on Me - The Remarkable Story of a young woman with POTS and the Dog that Keeps her Safe. https://www.dinet.org/member-stories/lean-on-me-–-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:aef8e51b-0f04-4af6-bfeb-f4d32d45f968
  12. by Chelsea Goldstein, Dysautonomia Information Network Emotional service animals (ESAs) have been a hot topic of discussion lately. Most likely, you have heard about people who have registered pets as ESAs in order to waive pet fees at apartment complexes, or to fly with their furry friends for free. However, these animals can be invaluable to people with mental health conditions, who may get therapeutic benefit from their companionship. Knowing the difference between people who are abusing the classification and people who are benefiting is always tricky, but knowing the proper channels to get an ESA can ensure that you are protecting this important designation of animal for people who need it. Read our article, It's Doggone Confusing: Understanding Service Animals and Emotional Support Animals (ESAs), to learn more about what ESAs are and how they may help you. If you find that an ESA may be a good fit for you, this article will tell you how to make that happen! Finding a Good Match You should understand your needs, and what qualities of an ESA may be a good match for you. Your Needs The US Department of Housing and Urban Development (HUD) states that, "Emotional support animals by their very nature, and without training, may relieve depression and anxiety, and/or help reduce stress-induced pain in persons with certain medical conditions affected by stress." Several research studies also indicate that positive interactions with an animal, such as petting, can reduce stress, alleviate loneliness, enhance social engagement, reduce pain, and improve depression (1). If you are considering an ESA, you should ask yourself these questions: How exactly will an ESA support me? Will they comfort me on high pain days? Will their companionship lower my anxiety, especially when doing difficult tasks such as traveling? Will they alleviate my loneliness due to isolation caused by my dysautonomia? Your answers to these questions will help you pinpoint your exact needs. This will also 1) help you figure out what qualities you need in an ESA, and 2) provide you with a legitimate explanation for your animal's ESA designation if it is ever challenged. Another factor to consider is your ability to care for an animal. You want to make sure that you, or someone in your household, can provide for the animal's well-being, even on tough days (1). The Animal’s Qualities There are no legal requirements for the type, breed, or qualities of an ESA (1), so it is important that you assess your own needs to ensure that your ESA is a good fit for you. For example, you may want an animal has a calming presence if you live with anxiety (2), such as a lower energy dog, or one that is not too vocal. No matter what, it is important that you and your ESA have a strong connection and emotional bond (2). HUD states, however, that housing complexes can deny ESAs if the animal is destructive or poses a direct threat to the health and safety of others (1). A direct threat must be based on the individual animal's behavior or history. In other words, housing complexes cannot deny an ESA on it's breed, or threatening behavior of other, similar animals. While it may be tempting to get that cute puppy you saw on PetFinder as your new ESA, having any animal is a lifelong commitment. It is important that you take the time to understand your needs, fully and honestly, as well as take time to get to know any potential ESAs to ensure they can truly provide the appropriate support and companionship that will help you thrive with your specific conditions. How to Get an Emotional Support Animal So you've decided that an ESA will help you live a healthier, more sustainable life. Good work! The next step is figuring out where to get one and how to get your animal the ESA designation. Where to Get an ESA You can get an ESA any place you would get a pet. In fact, many people designate pets they already own as ESAs after experiencing tremendous benefit from the emotional support and companionship of their pet. This is absolutely a legitimate avenue of getting an ESA - you have already established the necessary bond with your pet, you know the animal's temperament, and you have experience caring for the pet. Just make sure that you seek to designate your animal as an ESA because they are actually providing you with necessary therapeutic benefits. Otherwise, you can look into getting a new animal, and we recommend adoption. Your local animal shelter or rescue center could be a good place to start (2). Be sure to take your time getting to know any potential furry companions and ask a lot of questions, so you feel prepared for this major transition. Also consider what type of animal would be a good fit for you. Do you think you will have the strongest bond with a dog? Or, is a dog too much work given your health conditions? Try to answer these questions thoroughly, but keep an open mind. For example, you may consider yourself a "dog person," but find that you have an initial bond with a cat when you visit the shelter. Getting an animal is a personal decision, and it is important you take your time with the process, as well as trust your instincts. The Process of Getting an ESA To designate an ESA, an individual should get a letter from their mental health professional (psychiatrist, psychologist, licensed counselor, social worker, etc.) indicating that the animal provides emotional support that alleviates specific symptoms of the individual's conditions (3). The letter should include the name of the individual, that the individual has a mental health condition (though the specific condition does not need to be disclosed), and the recommendation that an ESA will benefit the person (1). It is also helpful to list the specific symptoms that the animal helps alleviate. This letter template is a great place to start. Unlike service animals, ESA owners may be asked to show this letter to landlords or airlines, especially if fees are being waived or animals are not typically allowed on premise (3). This is why it is important to honestly discuss your needs with your mental health professional, as well as how the animal assists with your symptoms. Beware that there are several online companies that sell ESA letters, or add you to ESA registries. While some of these companies do actually provide you with a mental health professional, many of them are scams. Note that there are also no required registries for ESAs. Since it is difficult to know which companies are legitimate, it is best to obtain a letter from your own trusted mental health professional. Resources Article Citations Chandler, C. (2015, April 20). Confirming the benefits of emotional support animals. Counseling Today. https://ct.counseling.org/2015/04/confirming-the-benefits-of-emotional-support-animals/ How to get an emotional support animal. (2020, February). ESA Doctors. https://esadoctors.com/how-to-get-emotional-support-animal/#benefit-esa-support Wisch, R. (2019). FAQs on emotional support animals. Animal Legal & Historical Center. https://www.animallaw.info/article/faqs-emotional-support-animals Additional Resources ESA Sample Letter. http://www.bazelon.org/wp-content/uploads/2017/04/ESA-Sample-Letter.pdf National Organization on Disability. http://www.nod.org Fair Housing Act. https://www.hud.gov/program_offices/fair_housing_equal_opp/fair_housing_act_overview Air Carrier Access Act. https://www.transportation.gov/airconsumer/passengers-disabilities NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:1a5b491d-78c1-4265-8e65-7ec0d1b91c61
  13. by Chelsea Goldstein, Dysautonomia Information Network Pet ownership is known to have positive impacts on depression, anxiety, blood pressure, and heart rate, to name just a few benefits. The advantages of having a furry (or scaly, or feathery) family member are no secret - 68% of US households have at least one (1). The values of pet ownership have been such a hot topic lately, that they have led to some confusion around the differences between pets, emotional support animals (ESAs), and service animals. The misuse and abuse of terms like ESA and service animal have created particular challenges for people living with chronic illnesses and disabilities who may benefit from either of these types of support animals. The rest of this article will clarify the differences between ESAs and service animals to provide a better understanding of how each may or may not be an appropriate addition to your home. What are Service Animals and Emotional Support Animals? It's important to know the difference. Service Animals Service animals are individually trained to perform tasks that help an individual with disability live more independently (2). As defined by the Americans with Disabilities Act (ADA), these animals can support individuals with a physical, sensory, psychiatric, intellectual or other mental disability (1). To be considered a service animal, it is important that the work the animal is trained to do directly supports the individual handler. According to the ADA, only dogs and, in rare cases, miniature horses can be legally defined as service animals. Some state and local laws may have more inclusive definitions of service animals, which will be discussed in more detail below (3). Nonetheless, dogs remain the most common service animal in the US. Labrador Retrievers and Golden Retrievers are the most popular breeds because they are known for their intelligence, loyalty, and patience - all qualities needed for this important work (1)! Emotional Support Animals (ESAs) Emotional Support Animals (ESAs) do NOT fall under the ADA classification of service animals. Rather, they are defined as providing companionship, comfort, and/or emotional support to individuals with psychiatric or mental health conditions (3). An ESA should be prescribed by a licensed mental health professional who will provide the owner with an ESA letter (5). This letter will be important if the owner is bringing their pet places, such as in housing complexes and on airplanes, that may otherwise restrict animals. While there are several online registration systems for ESAs, it is important to note that there is not an official or accredited registration process that is required (6). Dogs and cats are the most common types of ESAs, but any domesticated animal can be classified as one as long as the handler goes through the proper channels. ESAs do not require any specific training, but are expected to be well behaved in public places (5). What Tasks Do Service Animals and Emotional Support Animals Do? Guide dogs have an important job of assisting a person who lives with vision impairment, and they may be one of the most recognized types of service dogs. However, service dogs are trained in a variety of specific tasks to help individuals with different needs. Types of Service Dogs Guide Dogs help people with severe vision impairment or blindness travel and navigate their environments (2). Hearing or Signal Dogs are trained to alert individuals with severe hearing impairment or deafness when there is a sound, such as a knock on the door (2). Psychiatric Service Dogs work to detect and lessen the effects of psychiatric episodes. For example, they may turn on the lights for a person with Post Traumatic Stress Disorder, interrupt their handler if they are self-mutilating, or keep a disoriented person out of danger (2). Sensory Dogs are primarily trained to assist people with autism. They can do a variety of tasks for their handlers, including calming them if the person is experiencing sensory overload (2). Seizure Response Dogs may stand guard over people who have seizures, or warn them to sit down if they can sense a seizure coming (2). Mobility Dogs can assist with tasks such as retrieving items from the floor, pulling wheelchairs, or pushing elevator buttons (1). As mentioned above, all service dogs are trained in specific tasks for their handler. The categories of service dogs discussed here are not mutually exclusive or exhaustive. For example, a dog could be trained to help an individual with mobility difficulty pick things up off the floor, and also trained to sense when that person is about to have a seizure. It is also important to note that psychiatric service dogs are different than ESAs because they are trained in instrumental tasks, even though they likely provide companionship and emotional support to their handlers, like ESAs. This is not to devalue ESAs - their support and companionship for individuals with mental health conditions can be life changing. Individuals with dysautonomia can benefit from both service dogs and ESAs. For example, someone with POTS-induced syncope could benefit from a dog trained to provide a warning signal when they sense pre-syncope symptoms. This could help the person find a safe place to sit or lay flat and prevent dangerous situations, especially when out of the home (1)! An ESA could help someone who has health-related depression and/or anxiety. Companionship of an ESA could be especially beneficial for a person who feels isolated due to the limitations dysautonomia has placed on their life. The most important consideration for getting a support animal is to have a strong and realistic understanding of one's specific needs. Where are These Animals Allowed? Knowing the laws about where you can bring your animal can help you prepare for any pushback. Service Animals According to the ADA, service animals are allowed in housing, workplaces, on transportation, in educational institutions, and in any other spaces that allow the public, customers, or program participants (1,2). This includes businesses or programs that have a "no pet" policy because service animals are not considered pets (2). These organizations cannot charge any pet fees for service animals, and breed restrictions do not apply to them. They may, however, charge fees for damage caused by the animals (2). If you have a service animal, others cannot ask you for proof of the animal's certification, or about your disability. They can only ask: Is the animal required because of a disability? What work or task has the animal been trained to perform? (1,2) The Air Carrier Access Act (ACAA) states that individuals can fly with their service animals without additional fees. The airlines can ask the following questions for "verbal assurance" of the need for a service animal: What tasks or functions does the animal perform for you? Would you describe how the animal performs these tasks for you? (2, 7). Emotional Support Animals Emotional support animals are not protected by the ADA and, therefore, are not granted the same access to public spaces as service animals (5). However, the ADA is a federal regulation, and each state may have different laws regarding where ESAs are allowed (1). If you have, or are considering getting, an ESA, it may be wise to learn about your state's regulations here. ESAs do, however, have some protections under the ACAA and Fair Housing Act. The ACAA allows individuals to fly with their ESAs without additional charges. Airlines may ask the owner for an ESA letter stating that the individual has a mental health condition, that the animal is needed for travel, and information regarding the issuing professional's date and type of mental health licensure (2). ESAs are also considered "assistance animals" under the Fair Housing Act. This means that housing entities must make reasonable accommodations to allow ESAs in housing units that may otherwise prohibit pets. They also cannot charge pet fees for ESAs, and breed restrictions should be waived (8). Regulations, Responsibilities, and Etiquette Unfortunately, we have all heard of (and maybe even witnessed) instances when people take advantage of service animal and ESA classifications to get their pets places they wouldn't normally be allowed. It is important to know the regulations and responsibilities of these animals in order to protect the rights and needs of people who truly need them. Regulations The term service animal is based on federal regulations set forth by the ADA. These regulations are upheld nationally, and some common questions about them are answered here. It is also important to note that several states have individual laws about the inclusion and exclusion criteria of service animals and ESAs. While the ADA supersedes state law, these regulations can provide more clarity on where ESAs are allowed in each state. They can be found here, or on your state's Attorney General website. Responsibilities As a handler, it is your responsibility to ensure that your service animal or ESA is behaved in public, and trained to support you in specific tasks in the case of service animals. While there is not a single training or accreditation required by the ADA for service animals (9), it is dangerous and irresponsible to have a poorly or improperly trained service animal. In an era when service dog vests are readily available online, individuals living with disability, especially invisible disability, are judged and put in danger when people don't believe their service dog is legitimate (1). Read our additional articles on acquiring and training service animals to learn more about responsible options. Etiquette For Handlers: The ADA states handlers need to have control of their service animals. This is often done by keeping the animal on a leash or harness when outside the home, but there may be instances when such a device restricts the animal's ability to assist their handler. In these cases, the animal should be trained to respond well to voice commands (2). While businesses are not allowed to deny a service animal access to their spaces, they can ask a handler and service animal to leave if the animal's behavior is disrupting their business or posing a threat to other patrons. For example, a dog that is barking repeatedly in a movie theater could be asked to leave, as well as a dog that is growling and snapping at other shoppers in a grocery store (2). This is why it is important to ensure that service animals are well trained to be in a variety of public spaces. For passersby: Passersby should always remember that service animals are not pets, and stopping to pet, or otherwise distract, a service animal while out in public can be dangerous. These animals need to be focused on their handlers at all times to ensure they do not miss the subtle cues they need to perform their trained tasks (1). Please remember this next time you pass a service animal, and do not hesitate to tell passersby that they may not pet your service animal while it is working. Resources Article Citations Driscoll, E. (2019, June 4). The ins and outs of owning and training a service dog. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-ins-and-outs-of-owning-and-training-a-service-dog-r222/ Brennan, J. (2014). Service animals and emotional support animals: Where are they allowed and under what conditions? The ADA National Network. https://adata.org/guide/service-animals-and-emotional-support-animals ADA requirements: Service animals. (2020, February 24). U.S. Department of Justice Civil Rights Division. https://www.ada.gov/service_animals_2010.htm Wisch, R. (2019). FAQs on emotional support animals. Michigan State University Animal Legal & Historical Center. https://www.animallaw.info/article/faqs-emotional-support-animals Gibeault, S. (2019, October 3). Everything you need to know about emotional support animals. American Kennel Club. https://www.akc.org/expert-advice/news/everything-about-emotional-support-animals/ Harper, H. (2019, August 28). Do you need an emotional support animal? Here's what to know. Health.com https://www.health.com/pets/emotional-support-animals Gjelten, E. (2020). Flying with service dogs and emotional support animals. NOLO.com https://www.nolo.com/legal-encyclopedia/flying-with-service-dogs-and-emotional-support-animals.html Assistance animals. (n.d.) Housing and Urban Development. https://www.hud.gov/program_offices/fair_housing_equal_opp/assistance_animals Frequently asked questions about service animals and the ADA. (2015, July). U.S. Department of Justice Civil Rights Division. https://www.ada.gov/regs2010/service_animal_qa.html Additional Resources National Organization on Disability. http://www.nod.org Job Accommodation Network. https://askjan.org/ Americans with Disabilities Act. https://www.ada.gov/ Dog Owner. https://www.dogowner.co.uk/ The Dog Alliance. https://www.thedogalliance.org/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF Link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:7b7e9ba0-1e8f-4e30-bba0-1ce1e0febc88
  14. by Chelsea Goldstein, Dysautonomia Information Network You can't imagine your life without your furry best friend. The two of you have an inseparable bond that brings you comfort, joy, and companionship. Perhaps, your dog has even picked up on your needs over the years and lends a helping paw when you need it (e.g., your dog senses when you are lightheaded and braces their body against yours to provide some stabilization). This companionship has had you considering the benefits of a service dog for some time, but you have always been concerned about costs or adding another canine to your household. However, you just learned that the ADA allows owners to train their own service dogs and you feel confident that you and your pup could make a strong team. If this is you, keep reading for some pointers on starting your service dog training journey. If you are still deciding if a service dog is right for you, consider reading our article, It's Doggone Confusing: Understanding Service Animals and Emotional Support Animals (ESAs). Or if you think a service dog is a good option, but you don't already own an animal or don't want to train one yourself read A Helping Paw: Steps to Get a Service Animal to learn about your options. Pros and Cons of Training Your Own Service Dog There are many benefits to training your own service dog, but it is important to have realistic expectations. Pros Rewarding. Training your own service dog can be an incredibly rewarding experience. Not only will you have pride in all that you accomplish together, but some advocates of owner-trained dogs believe that the bond you build with your dog through an intimate training experience is invaluable. For example, the relationship you have before you train may help your training be more successful, and the deep understanding you acquire of your dog as you train will help you overcome any issues that may arise later on (1). Cost Effective and Timely. Many people choose to train their own service dogs because it is one of the most cost-effective options. It also means you can start your training as soon as you are ready, avoiding lengthy wait lists (1). However, it is important to remember that the training process can still take several months to years, and you will spend some money on supplies and training support. Adaptable. Unlike other assistive devices, service dogs can adapt to your changing needs. If you train your pup yourself, you will feel equipped to continue training your dog in different tasks as new needs arise. One owner reports that this has been one of the greatest benefits of training her own dog (1). Cons Emotionally and Physically Demanding. Training your own dog can be more emotionally and physically demanding than other options. You may feel exhausted at times when the training isn't going as you expected (1). You should also consider your physical needs and limitations when you embark on a training journey. Will you have the stamina to work with your dog frequently? There may be ways you can adapt the training process to your physical needs, but you should make a realistic plan from the beginning. You should also consider the possibility that your dog may not be successful in training. It may help to decide what course of action you will take if your dog does not take to training as expected (2). Hidden Expenses. While training your own service dog can be cheaper than other options, some unexpected expenses may arise. You will likely spend some money on treats, training supplies, vests, leashes, and training support materials like books, videos, and even classes (1). Time Consuming. Similar to other options, training your own service dog can be a long process. One owner-trainer reported that it took two years for her dog to be ready for service work (1). Remember that when you train your own dog, you are the one that has to be committed to training throughout the entire process. Supplies & Resources There are several supplies and resources available to support your training journey. While this is not an exhaustive list, it may give you a good place to start. Training Supplies. The training supplies you get may depend on the type of training you decide to use. Most training involves rewarding your dog with treats, and a treat pouch that hooks to your waistband can be an invaluable tool to ensure treats are ready for immediate reward while keeping your hands free for other tasks. You may even want to get a clicker to use as a training signal. Gear. You can train a service dog without gear, but gear may make the process easier depending on the situation. One owner with arthritis in her hands uses a Gentle Leader that requires only a soft pull to give the dog a command (1). You may also want to get your dog some gear to identify them as a "service dog in training" when you are out and about. This will help passersby recognize that the dog is working and, ideally, they will not distract your dog too much. Emotional Support. Even the strongest human-canine training teams will experience frustration, so it is important that you have a place to process that emotion so that it does not negatively impact your process. What friends or family members would be good supports throughout your training experience? Identify a couple of people before you start, and talk to them about what the process entails. You could also participate in online support forums such as the DINET Forum or the Facebook group, Service Dogs for POTS. Professional Support. Even though you are training your service dog yourself, you should be prepared to utilize some type of professional support throughout your process. Here are a few professional resources that you may find helpful... For assessing temperament: The book, Lend Me an Ear, by Martha Hoffman provides guidance on determining if a dog is suited for service work (1). The International Association of Assistance Dog Partners (IAADP) also shares directions for their temperament test online (3). For basic training: The American Kennel Club (AKC) Canine Good Citizens program can be completed through local trainers and/or a series of online videos. Upon completion of training, dogs can be tested by a local evaluator on ten basic skills, such as walking through a crowd. Owners can also explore local group classes such as those offered at PetSmart. For service training: The Dog Alliance offers the majority of their classes online (4). Top Dog also provides online classes at reasonable costs focusing on owner-trained service dogs (1). Top Dog's training books, Teamwork 1 and 2, are strongly recommended by experts (1). Dog Training Process Your training process will be highly individualized, but we've listed some general steps you should consider. 1. Assess your dog's temperament. Many experts and owner-trainers argue that honestly assessing your dog's temperament for suitability to service work is the most important part of the training process (1). Inadequately assessing your pup could cause a lot of heartache and frustration for you both if you invest significant time, energy, and money into training a dog who just isn't suited for service work. One owner-trainer discussed how her dog was great at performing tasks in isolation, but became easily distracted in crowds. This prompted her to seek professional support after several months of training, and the trainer identified that the dog was just not well suited for service work within two weeks (2). Dogs who excel at service work can be any breed, but you may want to consider some of the common characteristics of specific breeds during your assessment. For example, a scent hound (e.g., Beagle) may always have their nose to the ground triggering them to miss visual ques (1). Of course, true suitability comes down to the individual dog, not the breed. Other characteristics that make good service dogs are a calm demeanor, especially in unfamiliar settings, a willingness to please you, alertness without being reactive, good socialization, and reliable in performing tasks (5). 2. Assess your own needs and skills. Experts often refer to service dogs and their owners as teams because they are consistently working together. Thus, it is just as important to honestly assess your own needs, skills, and ability to commit to training a service dog. First, you'll want to ensure your dog's temperament and size fit your individual needs. For example, people needing assistance with mobility should assess if their dog is strong enough for the given tasks, and people who deal with fatigue and exhaustion will want a lower energy pup that does not demand a lot of exercise (1). You may also want to consider how any limitation you may experience due to your condition(s) may impact your training experiences. One owner-trainer reports that she felt equipped to train her own dog because she had extensive experience training dogs in the past and she worked part-time giving her time to commit to the pup. Specifically, she wanted to train her dog to be alert to sights and sounds to assist with her vision and hearing impairments. However, she struggled to teach the dog to react to sights and sounds because she could not always recognize them herself (2). If you have specific limitations that may impact your training experience, it does not mean that you can't train your own dog. It just means you may have to get creative in the way you train, or enlist outside help. 3. Start with basic training. Some of you may have already done significant basic training with your pups. Even still, it is important you spend time reinforcing the skills your dog has previously learned to ensure they consistently understand basic commands such as sit, stay, come, down, and heel. These types of commands are foundational for learning more complicated assistance tasks (1). You should also ensure your dog is house trained and can eliminate on command (5). This is especially important for service work because you may be in places throughout your days where your dog only has a few opportunities for elimination. Clicker training can be one way to help dogs learn basic commands. The trainer presses the clicker when the dog completes a task, which is accompanied by praise, treats, or a toy. This is called operant conditioning and the dog begins to see it as a game while they work toward reward. Once the dog learns the commands well, some experts suggest randomizing the rewards so that the dog learns to perform the tasks consistently, not only when a reward is given (1). 4. Socialize your pup. The level of socialization your pup requires may depend on the work you have already done with them. A basic training class is not only a great way to learn or reinforce foundational skills, but it can also be an opportunity to expose your pup to other dogs and humans while simultaneously focusing on specific tasks. Even if your dog is used to being around people and other animals, it is important that they can stay calm and on task in unfamiliar surroundings. The AKC Canine Good Citizens Program is a great training model to help your dog be well-socialized for service work (5). 5. Train your dog in service tasks. Service task training will depend heavily on the basic training you do with your dog. You will want to consider what type of basic commands could support your individual needs. For example, one owner-trainer reports that the basic commands of take, hold, and give were foundational in training her pup to retrieve items, open and close doors, assist with get dressed, and help with laundry. She advises thinking about the words you choose carefully and remaining consistent throughout training. Some experts believe dogs are prepared for service training between 1.5 and 3 years old. Their puppy years can be used to solidify basic commands and work on socialization (1). 6. Take a Public Access Test. Nearly all reputable service dog training organizations only certify service dogs when they pass a Public Access Test. While service dogs are not required to take a test by the ADA, it is a responsible way to ensure you and your dog can safely work together in public. The Assistance Dogs International (ADI) test can be found here. Resources Article Citations Furlong, R. (2006, December 1). Training your own service dog. New Mobility - Life Beyond Wheels. https://www.newmobility.com/2006/12/training-your-own-service-dog/ Reyenga, S. (2018, September 12). When I tried to train my own service dog. The Mighty. https://themighty.com/2018/09/train-my-own-service-dog-problems/ Froling, J. (1998). Finding a suitable candidate for assistance dog work. International Association of Assistance Dog Partners (IAADP). https://www.iaadp.org/temperament.html Train your own service dog. (2020). The Dog Alliance. https://www.thedogalliance.org/training-your-own-service-dog Karetnick, J. (2019, September 24). Service dogs 101: Everything you need to know. The American Kennel Club (AKC). https://www.akc.org/expert-advice/training/service-dog-training-101/ Additional Resources American Kennel Club Canine Good Citizens Program. https://www.akc.org/products-services/training-programs/canine-good-citizen/ Assistance Dog International. https://assistancedogsinternational.org/ Dog Owner. https://www.dogowner.co.uk/ Lean on Me - The Remarkable Story of a Young Woman with POTS and the Dog that Keeps her Safe. https://www.dinet.org/member-stories/lean-on-me-–-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/ Service Dogs for POTS Facebook Group. https://www.facebook.com/groups/ServiceDogsforPOTS/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:d45063b1-4274-4530-99e8-f1a2db5d7ab1
  15. If you've had to adjust to life with chronic illness, you've probably experienced stressors that people without health concerns don't even think about. Day-to-day tasks can seem insurmountable when you tackle them with pain, extreme fatigue, brain fog, and even syncope. Medical appointments can be stressful, especially if doctors don't have strong understandings of your condition(s). It can be exhausting to feel like you have to explain your condition(s) to everyone around you. Even then, they still may not understand (1). This article is meant to provide a few tips on how you might manage some of those stressors in your everyday life. These tips are not meant to be a substitute for professional medical advice, and any changes in lifestyle and routine that may impact your health should be discussed with your doctors. If you feel like you may be living with an anxiety condition, you should reach out to a mental health professional for support. Our article, I Can't Just Relax: Understanding Anxiety and Chronic Illness, may also be a helpful resource. If you or a loved one is experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. Symptoms of Stress As mentioned in many of our articles, dysautonomia is NOT caused by stress or anxiety, but it is common to experience stress as a result of navigating daily life with dysautonomia. One of the most common issues we hear from our members is that doctors mistake dysautonomia symptoms for stress or anxiety during their diagnostic processes, which can lead to complex feelings surrounding stress and anxiety. If we admit we are struggling with adjusting to life with dysautonomia, will doctors dismiss our dysautonomia diagnosis? How do I know if what I am feeling is caused by stress or dysautonomia? First, there is absolutely no shame in feeling stressed as you navigate day-to-day life with chronic illness. It's tough, and it is normal to feel overwhelmed in these circumstances. It can also be difficult to discern the source of your symptoms, since the physical symptoms of stress and dysautonomia can present similarly, including headaches, muscle tension, chest pain, fatigue, digestive issues, and sleep difficulties. If you are having a hard time figuring out if you are experiencing stress/anxiety, taking a closer look at your emotions and behaviors may be helpful. Feeling restless, having a lack of motivation, feeling overwhelmed, outbursts of irritability and anger, pervading feelings of sadness, overeating or under-eating, drug or alcohol misuse, and social withdrawal may all be symptoms of stress (2). Tracking your daily physical symptoms, emotions, and even triggering events can be one way to better understand the sources of your symptoms. You can do this using a small notebook that you carry with you throughout the day. It may be helpful to use a rating scale (e.g., 1-5) to rate the severity of your top five to ten symptoms each day. You should also record a little bit about your overall emotional experiences that day, as well as major activities. For example, how many hours of sleep did you get the night before? How active were you? What was your nutrition like that day? Over time, you will start to see patterns emerge - certain symptoms may get worse when you feel stressed or sad, or getting too little sleep may trigger your body to react in specific ways. Whatever you discover, it will be invaluable to have this data about your own body to better understand how to manage your condition(s) and any stress that may arise from living with them. There are also several apps that help you track symptoms. Flaredown is a free tracking app designed for chronic illness, and Tally and Symple are both free trackers with the options of paid upgrades. CareClinic embeds medication reminders and is $9.99 per month (3). You may want to explore a few options to find one that can be customized to your specific needs. Understanding Stress If you've been able to identify that health-related stress is impacting your life, it may be helpful to dive deeper into the specific experiences or circumstances that are the most stress inducing. Cognitive Behavioral Therapy (CBT) is a type of talk therapy conducted with a mental health professional who helps you process challenging situations in clear ways, so that you feel more in control of your specific stressors. Each therapist and client will approach CBT a little bit differently, but here a few general steps you might expect: Identify the stressful situation. Sometimes we have difficulty articulating what, exactly, is stressing us out when we are overwhelmed, so the first step of CBT is to identify the specific stressful triggers in our lives. If there are multiple stressors in your life, you and your therapist may spend some time pinpointing the ones that you want to prioritize (4). Cultivate awareness. A therapist will work with you to help you become aware of your thoughts, emotions, and beliefs about the these specific stressors. It may be helpful to keep a journal during this phase (4). For example, you may believe that everyone is annoyed when you cancel plans last minute to manage your illness. This may lead you feel guilt and frustration, and may make you think that none of your loved ones understand the severity of your situation. Identify negative/inaccurate thinking. Your therapist may ask you to focus on your reactions to your stressors, including physical, emotional, and behavioral reactions. Perhaps, you feel left out when you see your friends post pictures of the activity that you had to drop out of last minute. This may be followed by anger if your friends don't check-in with you, or you feel like they are starting to invite you to less outings. You may react by limiting contact with your friends. These are just a few examples of understandable reactions to this situation. They may, however, also be unhelpful in some cases. For example, some of your friends may want to spend time with you, but are hesitant to invite you to activities because they don't want you to feel bad if you can't go. Maybe they do get frustrated when you cancel plans because they don't understand your condition well, but they would be open to learning about it and would likely have more empathy if they had a deeper understanding as to why you regularly cancel plans. This phase will help you identify thought patterns that may be making you experience the situation in a more negative light than necessary. Reshape inaccurate thought patterns. It can be difficult to identify what parts of our reality are coming from fact, and what parts are coming from inaccurate, ingrained thought patterns. A therapist will help you work through this step (4). You may even be able to use the knowledge you learn to direct the situation, in some cases. For example, you could arrange an activity you know you could do with your friends, like watch a movie at your house, and use it as an opportunity to tell your friends you still want to be included in outings even if you have to cancel last minute. It generally takes five to twenty sessions with a therapist to complete CBT for specific stressors. CBT is just one stress management technique, and you should work with a mental health professional to decide what is best for you. Processing Feelings Frustration, overwhelm, and guilt are major sources of health-related stress. A variety of strategies, including CBT, can help us process these emotions. Frustration & Feeling Overwhelmed CBT is a great strategy for processing frustration and feeling overwhelmed by your health condition(s). Here are a few more strategies that may help: Make a list of the specific things in your life that trigger frustration or feeling overwhelmed. What can you take action on? Focus on only one or two items on your list at a time. For example, one person was worried about losing her job because her health caused her to fall behind on deadlines. She focused on that stressor and decided to talk to her doctor about her energy levels, research disability benefits, and search for jobs that were appropriate for her current health (5). Our work and disability articles may also provide some guidance. Journal your feelings in a less structured way. Sometimes, just getting our feelings onto paper can be therapeutic. Free writing is a great strategy: set a timer for a few minutes and the only rule is you must keep writing. This helps you express your genuine thoughts and feelings because you aren't able to overthink how and what you will write down. Schedules and systems can be effective tools to help you mitigate the stress of managing multiple medical appointments, or accomplishing day-to-day activities with limited energy and plenty of brain fog (5). Many years ago, I sat next to a woman on a plane who told me the secret to limiting stress was building margin into my day. It was a simple statement, but made me think about my habit to pack far more than is humanly possible in 24 hours, especially with chronic illness. From that moment, I started block scheduling, or scheduling chunks of time when I would only focus on one task or set of tasks. I have listened to that stranger's advice by always adding at least 30 extra minutes to however long I think a task will take me. It has helped with my brain fog because I only focus on the task at hand. It also encourages me to keep up with my daily self-care, like meditation and light exercise, because they're pre-scheduled. Finally, I break down my overwhelming to-do list to fit within the blocks (e.g., I usually prioritize one major task and one to two small tasks during my morning work block each day). You can learn more about the details of block scheduling from this awesome blog. Even though it may seem illogical for someone to feel responsible for something they can't control, many people with chronic illness feel guilty about how their health impacts people around them (6). A major step in processing that guilt is understanding where it comes from: Being a financial burden is a common worry among people with chronic illness. How will my family cope if I can't work and we lose my income? How will we pay my medical bills? It is easy to ruminate on how much better your finances may be if only you weren't so sick (6). Sometimes, we also worry about being a physical burden. Needing help with tasks like bathing, walking, and driving, can put extra strain on both you and family members. It can also be emotionally taxing to need/provide help in such intimate ways (6). We may also feel like we are the "high-maintenance" friend or family member. This may be a particular source of guilt if you have a lot of dietary restrictions that impact where, when, and what you can eat. Our loved ones may have made comments or jokes about our needs when out and about that put us in positions of feeling like we have to compromise our health to avoid such commentary, or risk getting negative feedback when we vocalize our needs (6). Nearly everyone I know living with chronic illness has felt guilty about their health at one point or another. Once we understand where it is coming from, what can we do about it? Similar to CBT, it can be helpful to practice separating the reality of the situation from the unhelpful thought patterns we may have around the situation. For example, is it realistic to believe that you could magically hold a full-time job if you haven't been able to work for months? Probably not. Therefore, thoughts about you being useless unless you can work to support yourself are unhelpful and untrue (6). Once you recognize these unhelpful thought patterns, it can make you feel more in control by shifting focus to the positives - what you can still do. A gratitude journal is one way to intentionally focus on the good in your life (6). We discuss several other self-care strategies below that may be helpful, too. A shift in perspective can help us view ourselves through the eyes of our loved ones. If roles were reversed would we feel like our loved one was a burden? We may feel stressed about the situation, but we would most likely want our loved one to be as comfortable, happy, and healthy as possible. This can help us believe them when they tell us we are not burdens in their lives (6). At Home Self-Care There are many aspects of our lives we can't control when we live with chronic illness. Self-care may seem trivial, but it can be one way to reserve a small moment of your day to prioritize your mental, emotional, spiritual, and physical health. Self-care can be a tough concept. Meditation, sleep, journaling, nutrition, exercise, hobbies, connection, and laughter can seem trivial when we are dealing with endless symptoms, financial troubles, or other major issues that accompany chronic illness. However, the value of self-care may lie in the fact that it forces us to say "no" even for just a few minutes. We have a moment to say no to the worry that may plague our thoughts all day long, its a tool to say no to activities that we know are harmful to our health, maybe it's just saying no to cooking dinner or attending a volunteer activity when we really just need a break. Sometimes, we need to say no to ensure we are preserving what mental, spiritual, and physical health we can. Mindfulness and meditation are a couple of strategies to help us actively say "no" to ruminating thought patterns that can cause stress. Mindfulness is the act of focusing on a task at hand to slow down the stressful thoughts that can activate the sympathetic nervous system, which in turn can worsen many dysautonomia symptoms. For example, if you are driving to a stressful medical appointment, mindfulness encourages you to be hyper focused on the present act of driving so you do not get consumed with stress and worry about the upcoming appointment. Thinking about stressful situations is normal but when we begin to ruminate on them for a long time they usually become more harmful than helpful. Mindfulness is a tool to help us escape that mental merry-go-round (6). Similar to mindfulness, meditation is a way to disrupt stress-induced thought patterns and refocus attention on the present to produce feelings of calm. There are countless types of meditation including guided, transcendental, deep breathing, chakra, etc. It may take some time to discover a type that works for you, but try not to get too caught up on the stereotypical image of a cross-legged, straight-backed, chanting yogi. That structure probably won't work for many people with chronic illness. I enjoy guided meditation to keep me focused, and I always lay flat on my back with my eyes closed and my body relaxed. I also meditate for no more than 10 minutes a day. This is the style that is sustainable for me and my body. What works for you may be different. If you are new to mindfulness and meditation, these resources may help you get started: The book, Mindfulness to Go: How to Meditate When You Are On the Move, is a good resource for people who can't commit to a block of time to meditate each day, but want to infuse some mindfulness practices into their existing routine. The Headspace app is a great tool for those who want to build a regular meditation practice into their day. Their short meditations are designed for beginners, you can track your progress in the app, and you can even pair with another user for accountability. The Calm app is another popular meditation resource. It provides guided meditations, breathing exercises, and even sleep stories (1). Strong sleep hygiene is another invaluable self-care tool for many people living with chronic illness. Sleep hygiene is a strange term and, no, it does not refer to bathing before bed. It is used to describe the habits and routines that we have around sleep to encourage the most restful experience possible. If you are someone who struggles to fall asleep or stay asleep (hello, me too!), and sleep aids give you nasty side effects like brain fog, then cultivating strong sleep hygiene habits may be beneficial to you. Before building stronger sleep habits, it is important to assess your current sleep to gain a complete understanding of what may trigger your restlessness. Track the following things each day for two weeks (1): Caffeine intake Alcohol consumption Computer/phone screen time Time you went to bed Hours of Sleep Wake-up time Number of times you woke up in the night and why Your smartphone can be a helpful resource to track daily screen time, and how often you wake throughout the night (1). After two weeks, assess this data. Do any patterns emerge? For example, I found that it always takes me several hours to fall asleep if I drink coffee in the afternoon. I switched to drinking coffee only when I wake up, and drink tea later in the day if I need a pick-me-up. Depending on your specific sleep patterns, some of these sleep hygiene tips may encourage more restful sleep (1): Limit your caffeine intake, especially after 2 pm Engage in light exercise each day, but avoid exercise four hours before bed Use blue light filters on your electronics, or blue light filtering glasses Establish a bedtime routine around the same time each night (e.g., drink a cup of herbal tea and read). Over time, your body will be triggered to prepare for sleep when you engage in your routine Ensure your sleep space is dark and cool (This may be especially important if you deal with temperature regulation issues!) Set your phone on Do Not Disturb at a specific hour each night, and ensure it is face down so the light does not disrupt you Do not lie in bed trying to fall sleep for more than 20 minutes. If you can't fall asleep, get out of bed and engage in a non-stimulating activity (e.g., read a calming book, or do a repetitive task like knitting or coloring) Try to wake up around the same time everyday Good sleep is often overlooked, yet so many of us with dysautonomia struggle with falling and staying asleep. These habits don't guarantee perfect sleep every night, but practicing them regularly will likely improve your overall sleep hygiene. For me, I have found that getting good sleep can do wonders to improve nearly all of my other symptoms. I've learned to make my sleep routines some of the most important parts of my day. We could write an entire book (and then some) on self-care techniques. Many of them fall within the categories of nutrition and exercise, but we won't discuss those here. Instead, we encourage you to check out our articles specifically regarding these topics on DINET.org. A final type of self-care we think is important to mention is connection, both with yourself and others. Connection with Yourself One way to connect with the "true you" is to make time for your hobbies. If you don't feel like you have any hobbies, a good question to ask yourself is, "What made me light up when I was a kid?" Pursuing hobbies to minimize stress can seem like a cliché suggestion, but research demonstrates that engaging in hobbies is associated with significant, positive effects on our health, such as lower cortisol levels, decreased waist circumference, and perceptions of better physical function. Hobbies are also associated with better psychological states (7). Why? Perhaps because hobbies cultivate eustress, or healthy stress that is defined as stimulating enough to help us feel excited about, and engaged in, life, but is not too overwhelming. A hobby can be particularly beneficial if you feel a bit stuck, which can occur when we are home bound for periods of time due to our health needs (7). A sense of humor has also been shown to significantly decrease stress (2). Sometimes we can even find humor in the very things that stress us out! Connection with Others Humor is a great way to minimize stress on your own, but it can also be therapeutic when shared. Many people who live with chronic illness share a particular type of humor - raise your hand if you've ever laughed with a fellow chronic warrior about the absurd situations you have been in due to your health needs! A shared sense of humor is just one example of the benefit of connecting with other people who also have chronic illness. I have made a number of friends over the years in hospitals, on social media, and through DINET. I have never even met many of them face-to-face, but they have been invaluable, trusted friends who I couldn't imagine my life without! It is also important to foster connections with your loved ones who don't live with chronic illnesses, but these relationships can be challenging if you do not feel like they understand your situation. One way to appreciate these relationships, even if there isn't full understanding, is to identify the strengths of each one. For example, you may have a funny friend who is always up for making you laugh through a struggle, and you may find that another friend is a fantastic listener. Perhaps you gravitate toward each of these friends in different situations, and that is okay. If you are struggling to identify trusted relationships in your life, you can review this list of qualities to look for in healthy, trusting relationships. Who in your life embodies these qualities? Write their names down, and what you love about each of them. Keep this list close. Also remember to think about what you can give in these coveted relationships because you certainly have a lot to offer, too! Resources Article Citations Living with Dysautonomia. (2018, May 16). Cleveland Clinic. https://my.clevelandclinic.org/health/articles/17851-living-with-dysautonomia Stress Management. (2019, April 4). Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987 Menchaca, D. (2020, February 20). 5 Symptom Diary & Health Journal App. Teamscope. https://www.teamscopeapp.com/blog/5-diary-apps-for-tracking-symptoms Cognitive Behavioral Therapy. (2019, March 16). Mayo Clinic. https://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/about/pac-20384610 Marina (2020, January 20). The Discerning You. https://thediscerningyou.com/how-to-cope-when-you-feel-overwhelmed-by-your-chronic-illness/ Keys, A. (2019, June 4). Surviving the Guilt that Comes with Chronic Illness. Dysautonomia Information Network. https://www.dinet.org/info/newsletters/surviving-the-guilt-that-comes-with-chronic-illness-r221/ Scott, E. (2019, September 30). The Importance of Hobbies for Stress Relief. Very Well Mind. https://www.verywellmind.com/the-importance-of-hobbies-for-stress-relief-3144574 Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness Increase Your Productivity with Block Scheduling by the Work at Home Woman. https://www.theworkathomewoman.com/block-scheduling/ Mindfulness to Go. https://www.davidharp.com/ Headspace. https://www.headspace.com/ Calm. https://www.calm.com/ MentalHealth.gov. https://www.mentalhealth.gov/talk/people-mental-health-problems NOTE: This article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, the name of the group and the number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:76fbe912-1358-4ca1-b909-fcec4470e42a
  16. Living with chronic illness is so much more than dealing with a myriad of physical symptoms. Some of the most common struggles our members deal with are unanswered questions about the future: Will I ever get better? How will I support myself? Will it get worse as I get older? How will it affect my relationships? Navigating the unknowns of living with chronic illness is such a common and impactful experience that researchers have developed a term for it - illness uncertainty. Research has found that this type of uncertainty is heightened when people live with chronic illnesses that have unpredictable outcomes (1). And, as you know, there are very few certainties in living with dysautonomia other than, well, we're all pretty unsure about the future. Life without chronic illness is unpredictable enough, but when you add a condition that you have little control over it naturally leads to questions about the future. It's normal to ask these questions, and if you feel like this uncertainty has developed into an anxiety condition, you should reach out to a mental health professional for support. Our article, I Can't Just Relax: Understanding Anxiety and Chronic Illness, may also be a helpful resource. If you or a loved one is experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. 10 Common Future Fears You may feel alone in navigating the increased uncertainty of your future with chronic illness. Connecting with other people who have similar conditions can show you that many of your questions about the future are quite common among this crew! 1. How will I feel today? I'm sure you understand the bodily changes that can occur from day to day, even moment to moment, when you have chronic illness. You may have gone to the gym in the morning, and by the afternoon you are bedridden with a migraine. Many of us with chronic illness wake up with the question, "Will my body keep up with my plans today?" This can cause incredible uncertainty regarding whether or not we will be able to get through our everyday activities (2). 2. Will I ever escape this vicious cycle? How many of you can relate to the following: A migraine attacked yesterday, which means you only got an hour of sleep last night. That lack of sleep triggered all of your symptoms so, today, you have terrible pain and nausea, not to mention exhaustion. You try to drink some coffee for a little boost, but that nausea won't let you. It also won't let you eat much, so now your body lacks nutrition. You go to bed early hoping to recover, but insomnia has another plan for you. This truly is a vicious cycle, and your spirit can start to break when you feel like your health is out of your control. Some people with chronic illness suggest engaging in an activity you can completely control to help your mind and body remember that you do have a say in some things, even if they're small (3). 3. What if I have to cancel my plans? One person reported feeling anxiety every time she made plans because she couldn't know if her body would be prepared the day of. She feared having to cancel commitments, disappointing her friends, and even getting her hopes up for an activity she wouldn't be able to join. Another chronic illness warrior suggested doing everything you can before your plans to prepare, such as make breakfast and coffee ahead of time, lay out your clothing, and pack up any necessary items the day before (3). If possible, I would also try to schedule "light" days before and after any big plans. What can you do beforehand to ensure your body is as ready as possible? Also, giving yourself a rest day after a major activity can relieve stress and minimize physical symptoms. 4. Will anyone ever truly accept me? Even though I ask this question more often than I'd like to admit, it is always so heartbreaking to hear other people doubt their worthiness for connection just because they live with chronic illness. We all deserve connection. This fear can manifest in a number of ways. Single people may wonder if someone will ever fully accept them and their illnesses. Some people may even think they can't put the "burden" of their condition on someone else when they struggle to deal with it themselves (3). Even people in romantic relationships fear losing their partners. Some people have said they're afraid that their partner may leave them if the illness becomes too difficult, even though their partner has reassured them of their commitment. People may also feel overlooked by their friends and family who all seem to be moving on in life without them. These are devastating thoughts, and one warrior says that she practices recognizing these thoughts as a product of her anxiety, not reality. She reminds herself of the strong connections in her life, especially with friends who also have chronic illness (3). 5. What happens if I lose my support system? Many of us need support from other people to get through our everyday activities. A lot of us rely on a partner or a close family member, such as a parent, for that help. What happens if we lose that person we depend on (3)? This is another opportunity to practice separating our fear-based thoughts from reality. There is always the possibility of losing someone, and you may want to think about what safeguards you could put in place to support yourself if that happens, such as a life insurance policy or identifying another support person. It is also important to recognize when these fear-based thoughts manifest into negative consequences in your life. For example, if it feels traumatic every time your support person is not around, or if you are staying in an unhealthy relationship because that person helps you with everyday tasks, you may want to consider talking with a mental health professional. 6. Will I be able to support myself financially? We won't sugar coat it - chronic illness can be expensive. Between the appointments, medication, supplements, pricey dietary restrictions, gadgets that make life just a little easier, and any other hacks to manage your day-to-day activities, it can be incredibly frustrating to think about how much money it costs to barely get by. On top of this, a lot of people have lost, or fear losing their jobs to their illness (3). I was diagnosed with dysautonomia in my early twenties and being able to financially support myself has been an ongoing fear of mine throughout my entire adult life. Illness has caused me to quit a couple of traditional jobs, but I have always found a way to get by financially because chronic illness has also taught me to get creative with work and recognize there are several options on the spectrum of work between no income and a 9-to-5 office job. It is not easy to figure out work that works with our bodies, it's certainly not fair, and it probably doesn't look like the career we always imagined. In my opinion, however, it is definitely better than feeling like I don't have any options. We recommend reading our work and disability articles for more detail on how to find income streams that may work for you. 7. Will I have to give up on my dreams? Some people report not pursuing their dreams because they're afraid that their health complications will force them to fail, anyway. For example, one person said she delayed applying to graduate school because she is afraid her health will keep her from finishing the program (3). Another person encourages us to remember that it is possible to recover from what we see as failures (3), and most of us have probably already recovered from many failures in our own ways. As much as possible, try to give yourself credit for the day-to-day accomplishments in navigating this unpredictable life. 8. Will I be able to take care of my children? Will I be able to have children? I remember the first time I heard someone I deeply admired make the comment, "Disabled people shouldn't have kids." It broke my heart to hear someone close to me make such a hateful and misinformed comment. The truth is that many, many people with chronic illness and disabilities have children and are wildly successful parents. However, that doesn't mean we don't have questions about the experience. Will my children inherit my condition? Will I get sick during pregnancy? How will I find the energy to be a good parent? We suggest you read our articles on pregnancy and parenting for more practical discussions about these questions. In short, parenting is a tough job especially when health issues are involved. Like many things with chronic illness, you will likely face additional parenting challenges, you may have to get creative at times, and you'll have to remember to give yourself a lot of compassion in the process. And please, please try not to internalize horrendous comments - people living with disabilities make some of the most empathetic and successful parents I know. 9. Will my health get worse with age? This is a big question for people with conditions, such as dysautonomia, that don't have much research on the prognosis of the condition over time (2,3). This question can threaten our sense of safety and identity: What will happen to me? How can I prepare if I don't know (3)? We don't have a time machine to see the future, but we can work to focus our mental energy on creating a meaningful present, as well as advocating for continued research and awareness. 10. Will I die from complications of my condition? This is a really, really tough to question to answer because most people have multiple chronic illnesses that present individually. Some people suggest doing things that remind you of life when this question begins to cause stress or anxiety, such as taking deep breathes, stepping outside to feel the fresh air, eating a favorite food, or chatting with a friend (3). How Uncertainty Impacts our Health Remember that term from the beginning of the article - illness uncertainty? It turns out that it is such a common phenomenon among people living with chronic illnesses that researchers have spent a lot of time studying it. Here are some highlights of their findings: Illness uncertainty is defined as the "inability to determine the meaning of illness related events" (4). One author provides a compelling stop sign analogy to explain how this experience of uncertainty impacts our lives. In summary, we are able to function in our environments because we understand the universal meanings ascribed to different objects, experiences, and words. For example, consider the meaning of a red STOP sign in the US. All US drivers are aware that this sign means you must completely brake your vehicle when encountering it. Now, imagine that sometimes the STOP sign means "speed up" while other times it means "brake." This ambiguous meaning would certainly cause you and other drivers to be confused and anxious each time you encounter the sign. What if both you and another vehicle speed up and collide (2)? Living with chronic illness is like driving with confusing, ambiguous road signs. Sometimes, your nausea means you didn't eat enough. Other times, it may be that you ate too much of the wrong thing. You've had days when exercise gets your blood flowing to improve your symptoms, and days when the exact same exercise causes your heart rate to skyrocket landing you in bed for the foreseeable future. No wonder researchers have spent a lot of time on this topic - how can we navigate our environments when our own bodies are fraught with this type of confusion? To better explain illness uncertainty, researchers have broken the concept into four factors - ambiguity, complexity, deficient information, and unpredictability (2). Ambiguity refers to an event that has unclear or multiple meanings (2). Raise your hand I've you've ever started feeling cold-like symptoms and you are unsure as to whether you have an infection or it's a flare of your chronic condition! Complexity occurs when we don't fully understand the mechanisms behind our conditions or the potential treatments (2). This is an all too familiar experience for people with dysautonomia because there is relatively little information about our condition, its causes, its prognosis, and best practice. Deficient information is related to complexity and is strongly connected to our interactions with others (2). Most of us have encountered doctors that don't know much about our conditions, as well as friends and family who provide well-meaning but misinformed suggestions (Have you tried yoga!?). Unpredictability probably doesn't need to be explained to you. It is our day-to-day experience of not knowing what, when, or how our bodies will act in nearly any circumstances. Needless to say, illness uncertainty is pretty inherent to living with dysautonomia. Researchers have found that it can contribute to emotional distress, anxiety, and depression. Research also demonstrates that participants who experienced pain due to unknown causes had worse perceptions of pain than people who experienced pain due to known conditions (2). This does not mean that people with illness uncertainty are dramatic. Rather, it means that there is a strong mind-body connection that links this pain and uncertainty. Coping with Illness Uncertainty Sometimes it can be therapeutic to have a term, such as illness uncertainty, to describe and normalize what you have been experiencing. Having a plan, or recipe, to manage your health can provide a further sense of control over your experiences. 1. Assess your recipe for optimum health. Research clearly demonstrates that addressing illness uncertainty should be considered an important part of our health management. When our day-to-day experiences feel beyond our control, it can help to have a plan that maximizes health as much as possible and gives us tools to manage future flares. Preventive aspects of your plan may include nutrition, movement, sleep habits, mental health support, rest, and maintenance medications (2). You may also what to consider what will help you manage flares, such as specific dietary items, as needed medications, and pain relief aids like a heating pad. 2. Write down your recipe. Many of us already have a loose recipe for our health. We may not even recognize it as a health management plan because it has become so integrated into our day-to-day routines. By writing down your recipe, however, you can identify what ingredients serve you, what ingredients could be adjusted, and where you might want to add or remove some ingredients to encourage optimum health. We call this plan a recipe because there is not one magic cure for chronic illness, and it is often combinations of ingredients that make the plan, or recipe, beneficial to our health (2). 3. Adjust the recipe as needed. Here's the thing about chronic illness - just when you think you've perfected your recipe for managing your condition, something in the recipe stops working as intended because your body and your environment inherently change over time. But, you worked so hard to perfect that recipe, you're not going to stop now! If you have ever been attached to a health management plan that no longer serves you, you are not alone. I have watched (and experienced) how clinging to specific treatments, dietary regimens, medications, or any other ingredients can cause tremendous stress when we fear losing access to them, can give us negative side effects we aren't willing to see, or can cause incredible financial strain for little benefit. It is so hard to let go of our recipes when they no longer serve us because we invested a lot of time and energy into them and we don't want to lose the feelings of control and improvement they once provided to us. When these moments arise, try to remind yourself that you don't have to let go of your recipe, entirely, you just need to adjust it to fit any changed circumstances in your life. Let's explain the importance of adjustment by returning to our recipe analogy, consider you are renting a beautiful cabin in the mountains and want to make your famous peach cobbler, but you forgot the peaches! The nearest store is a 45 minute drive, and if you go there now you'll miss the sunset, let alone this coveted time with your family. But, there are a few apple trees on the property. What do you do? You probably encourage your family to pick some apples, and you have a fun story to relive about the delicious apple cobbler you made from fresh apples on the property. And don't forget that sunset you watched sink over the mountains as you all ate your cobbler on the back porch. Just like the cobbler, when you are in a situation in which you are missing an ingredient to your health recipe consider the alternatives available to you before you put yourself through a lot of work, time, and money trying to access the exact ingredient you think you need. Maybe you do need to put in the extra effort to get that critical ingredient, but it doesn't hurt to assess the situation first, fully and honestly. Resources Article Citations Wright, L., Afari, N., Zautra, A. (2009, May). The Illness Uncertainty Concept: A Review. Current Pain and Headache Reports. https://www.researchgate.net/publication/24187615_The_illness_uncertainty_concept_A_review Virant, K. (2019, April 15). Chronic Illness and Uncertainty: Living with the Unknown. Psychology Today. https://www.psychologytoday.com/us/blog/chronically-me/201904/chronic-illness-and-uncertainty Colbert, C. (2019, March 7). 15 Common Types of Fear People with Chronic Illness Experience (and How to Cope). The Mighty. https://themighty.com/2019/03/fears-chronic-illness-coping/ McCormick, K. (2002). A concept analysis of uncertainty in illness. Journal of Nursing Scholarship, 34(2), 127-131. https://pubmed.ncbi.nlm.nih.gov/12078536/ Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness NOTE: This article is available in pdf form below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:2a6b6589-711c-49c3-bcc1-5ff205b1e58c
  17. Anxiety, similar to dysautonomia, is clouded by stigma and misunderstanding. You may have encountered the female hysteria stereotype at some point, and you may have even experienced judgement due to this label or others like it. Unfortunately, many people with misunderstood health conditions, such as dysautonomia, are hesitant to openly discuss anxiety because our symptoms are so often dismissed as "all in our head" and we are told we can solve them if we "just relax". Even more, many medical professionals don't understand how to properly test for dysautonomia so their diagnostics often demonstrate normal results, which further confirms their suspicions of us "just being anxious" people. This can create a confusing and vicious cycle for patients. It is important to note that dysautonomia is NOT caused by anxiety (1), but that anxiety can certainly arise from dealing with the stress of the condition and the misunderstanding that surrounds it. It is also possible for people to have both anxiety AND dysautonomia, and each condition deserves understanding, respect, and proper treatment. Types of Anxiety Occasional anxiety during stressful situations is expected. An anxiety condition is when anxiety is persistent, and it may grow worse over time. It could also interfere with daily activity, such as work, self-care, and relationships (2). 1. Generalized anxiety disorder (GAD): Generalized anxiety disorder is characterized by feeling "excessive anxiety or worry, most days for at least six months." (2). Feelings of anxiety can arise around anything, such as work or school situations, close relationships, social settings, health concerns, and even routine tasks. This can cause significant disruptions to one's life. Symptoms may include (2): Feeling restless/on-edge Fatigue Difficulty concentrating Irritability Muscle tension Sleep difficulties 2. Panic disorder: Panic disorder involves panic attacks, or periods of intense fear, that come on suddenly and peak within minutes. Some panic attacks are triggered by a feared situation, such as heights, while others can occur unexpectedly. Many people try to control panic attacks by avoiding places, situations, or objects that may trigger them. This may have an adverse effect by creating fear of panic attacks themselves. Some symptoms of panic attacks are (2): Heart palpitations Sweating Trembling/shaking Shortness of breath Feeling impending doom 3. Phobia: While it is expected to feel fearful in certain situations, a phobia is when the feelings of fear around an object or situation are far greater than the actual danger posed in those instances (2). Some common phobias include heights, certain animals or insects, tight spaces, and being alone (3). People with phobias may feel (2): Excessive worry about triggering situations Avoidance of fear-inducing situations Immediate and intense anxiety when encountering situations 4. Separation Anxiety: We generally discuss separation anxiety in children, but it can also occur in adults. It is characterized by a fear of being apart from people to whom they are attached. They may worry about their people being harmed when they are separated, have nightmares about being apart, and even experience physical symptoms during separation. This can lead them to avoid separation from their attachment figures (2). These are a few of the more common types of anxiety, but like many conditions, they are not clear-cut categories. It is always important to discuss your individual symptoms with a professional to get an appropriate diagnosis and support. Anxiety and Chronic Illness Symptoms of anxiety, similar to depression, can be confused with symptoms of chronic illness, especially dysautonomia. Check out our article You're Not Alone: Understanding Depression and Chronic Illness to learn more about depression. Symptoms of anxiety and dysautonomia can be so strikingly similar that many doctors misdiagnose dysautonomia patients with anxiety because they do not understand the subtle differences between the two. Even people living with dysautonomia and anxiety may have a difficult time understanding the cause of their own symptoms on a day to day basis. One reason for the confusion is the way that dysautonomia, particularly POTS, is related to dysfunction of the autonomic nervous system (ANS). The sympathetic nervous system (SNS) is the part of the ANS responsible for our fight or flight response or, medically speaking, the release of norepinephrine. Generally, our bodies release norepinephrine in response to stressful situations. However, in POTS, this response can activate without a triggering event, which causes anxiety-like symptoms in the body (4). These symptoms of dysautonomia, such as tachycardia, chest pain, or near-fainting can, understandably, induce fear and worry further entangling dysautonomia and anxiety. It is normal for these symptoms to trigger stress, especially if they dramatically interfere with your ability to engage in everyday life. However, many of us can tell stories, especially during our diagnostic processes, of medical professionals who told us our symptoms are “all in our head” and our cure was to "just relax". We could feel dramatic physical changes in our bodies, as if our hearts were about to pound out of our chests. But, we were often dismissed as being dramatic after our doctors assessed our symptoms, heard the concern in our voices (justifiably so!), and viewed a few "normal" test results. This type of invalidation is stress-inducing. Such dismissals are not only problematic because they deny us understanding and treatment for our dysautonomia, but they also perpetuate shame around anxiety by insinuating mental health conditions that are “all in our heads” deserve less understanding, acknowledgement, and treatment than conditions that may be “all in the body.” While many, if not most, of us have had eerily similar experiences, it is also important to remember the relief and validation we felt when we did find the amazing physicians who believed our symptoms and guided us toward proper diagnoses. While dysautonomia is NOT caused by anxiety, it is common to experience anxiety and physical conditions at the same time. Chronic illness and anxiety can create a feedback loop: we may feel anxiety when our physical symptoms are disbelieved or dismissed by professionals and loved ones, especially if they are invisible. In turn, this stress can perpetuate our physical symptoms (5). It can also be difficult to manage symptoms of multiple conditions. One technique is to keep a medical journal to document how you feel (physically and mentally) when your symptoms arise, what you are doing, and any other circumstances. Management Options These are a few general management options. You should work with your medical professional to tailor a plan specific to your needs. 1. Medication: Several types of medication can be used to manage the symptoms of anxiety. Medication treatment should ALWAYS be guided by a doctor who should consider all of your health conditions. Benzodiazepines can be helpful for some people, but are also addictive, so short-term use may be considered. Anti-depressants may disrupt the chemical processes that trigger anxiety, but it may take time to find one that works for you. Beta-blockers can help manage the physical symptoms of anxiety, such as tachycardia. You should never start or stop taking any of these medications abruptly or without professional guidance, and you should always talk with your doctor about any side effects (2). Many people, however, may not need medication and prefer other avenues of management to avoid potentially harmful side effects (4). 2. Psychotherapy: Cognitive Behavioral Therapy is a common psychotherapy practice used to manage anxiety. It focuses on identifying the thought patterns that lead to anxiety, and then disrupting those thought patterns. Other forms of psychotherapy, such as exposure therapy may be helpful in some circumstances (2). 3. Support: It is always important to surround yourself with supportive environments where you feel you can discuss your mental health openly, either in-person or online. The DINET Forum is one space where you can virtually connect with other people living with dysautonomia to share difficulties and accomplishments, as well as provide support to fellow members. Often times helping someone else can positively impact your own mental health. 4. Lifestyle Changes: Some people find that lifestyle techniques such as deep breathing, pursuing purpose, developing preventive habits, and creating time to relax and laugh are helpful tools to manage the symptoms of anxiety. While lifestyle changes are often activities you can engage in on your own, you should always discuss them with professionals to ensure they are helpful to your anxiety and to determine if they should be supplemented with other forms of management. Just remember that it may take some time to figure out what works for you, and what works is often a combination of approaches that may change as your situation shifts over time. If you or a loved one are experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. Lifestyle Techniques Here are some ideas of lifestyle techniques that may help support positive mental health. 1. Breathe Deep: Apps like Breathe can help you practice deep breathing, which can minimize anxiety because you 1) focus on one task, and 2) re-oxygenate your body to prevent hyperventilation. There are multiple techniques for deep breathing, but they often involve breathing from your diaphragm (not your chest) and taking slow steady breaths. This technique can be used virtually anytime, anywhere, and it may be especially helpful when you feel intense bouts of anxiety about to arise (4). 2. Pursue Purpose: There are many ways to pursue purpose, but it is important that you find what works for you. Sharing your own experiences and providing a listening ear to others in similar circumstances in a support group can be one way to fulfill purpose. You may also find purpose in your work or family roles. You could even seek out a community organization or an activity group that connects over a common interest. Volunteering can be another way to gain purpose. If you are not able to get out of your home, there many opportunities for volunteering online, including with DINET. All of these activities provide a similar benefit of helping you focus on a loved and meaningful activity, which can disrupt anxious thought patterns (4). 3. Develop Preventive Habits: Preventive habits can include eating well-balanced nutritious meals, appropriate exercise, and strong sleep hygiene. Diet, exercise, and sleep are often difficult for people living with dysautonomia, anxiety, and other chronic conditions, so it may take some time and professional support to figure out the exact habits that work for you. Some people with anxiety find that minimizing excessive sugar and caffeine can help manage their symptoms (4). The type and intensity of exercise that works for you may vary depending on your overall health, but many people find that even light stretching, seated exercise, or a short walk can help with anxiety. To improve sleep, try to go to bed and wake up at the same time everyday. Limit distractions in your bedroom, and ensure it is cool and dark. Sometimes it may be beneficial to discuss your medications with your doctor to determine if they may be disrupting your sleep, or if taking them at a different time of day would be helpful (6). 4. Make Time for Relaxation and Laughter: Laughter and relaxation can be difficult if you live with anxiety, so intentionally scheduling time in your day to pursue them can help manage symptoms. Does a daily meditation practice help you feel more grounded? How do you feel when you call a friend who always makes you laugh (4)? Resources Article Citations Postural Orthostatic Tachycardia Syndrome (POTS). (2020). Johns Hopkins. https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots Anxiety Disorders. (2020). National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml Osborn, C.O. (2019 February 27). Common and Unique Fears Explained. Healthline. https://www.healthline.com/health/list-of-phobias MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/ Bates, M. (2014, July 22). Silent Suffering: Anxiety and Chronic Disease. My Good Days. https://www.mygooddays.org/blog/silent-suffering-anxiety-chronic-disease/ Tips for Beating Anxiety to Get a Better Night's Sleep. (2020). Harvard Health Publishing. https://www.health.harvard.edu/mind-and-mood/tips-for-a-better-nights-sleep Additional Resources DINET Forum https://www.dinet.org/ DINET Volunteer Page https://www.dinet.org/get-involved/volunteer/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness NOTE: This article is available in pdf form below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:bacaa14c-1235-4419-be2c-faf5c90c6538
  18. <p>http://www.news.harvard.edu/gazette/1997/04.17/DrugProtectsAga.html</p>
  19. <p>http://hyper.ahajournals.org/cgi/content/full/30/5/1062</p>
  20. <p>http://www.ncbi.nlm.nih.gov/pubmed/11990670?dopt=Abstract</p>
  21. <p>http://pt.wkhealth.com/pt/re/dyslipidaemia/pdfhandler.00004268-200511000-00008.pdf;jsessionid=LnhQwG11yV0fKLVmTywMzWdZLQfyhxRq1HLnJ9%201n7vhQ2rxnX4yv!-2048123402!181195628!8091!-1</p>
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