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By: Chelsea Goldstein, Dysautonomia Information Network

IMG_BalancingAct.jpg.7675a921302f450d262703d7392e916e.jpgIf 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.

  1. 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. 
  2. 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.
  3. 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.

  1. 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? 
  2. 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).
  3. 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

  1. 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. 
  2. 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). 
  3. 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.


Article Citations

  1. 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/  
  2. Laurence, B. (2020). What is the difference between Social Security Disability (SSDI) and SSI? Disability Secrets. https://www.disabilitysecrets.com/page5-13.html
  3. Laurence, B. (2020). What are the rules and requirements for Social Security Disability cases? Disability Secrets. https://www.disabilitysecrets.com/the-rules.html
  4. Benefits planner: disability, how you qualify. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/qualify.html
  5. You may be able to get Supplemental Security Income (SSI). (2020). Social Security Administration. https://www.ssa.gov/pubs/EN-05-11069.pdf
  6. State disability insurance. (2019, May 17). Eligibility.com. https://eligibility.com/state-disability-insurance
  7. Benefits planner: family benefits. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/family.html#anchor3

Additional Resources

  1. Apply for Social Security Online. https://www.ssa.gov/disabilityssi/
  2. Disability Secrets. http://www.disabilitysecrets.com/
  3. 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/
  4. National Organization on Disability. http://www.nod.org
  5. 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.




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