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  1. 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
  2. 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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