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  1. 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
  2. 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
  3. 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
  4. 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
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