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By: Chelsea Goldstein, Dysautonomia Information Network

IMG_PerfectFit.jpg.f0f2805aaabfcc925da3a6b726d0a009.jpgLiving 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

  1. Stoerkel, E. (2020, April 23). What is a strengths-based approach? (Incl. activities and examples). Positive Psychology. https://positivepsychology.com/strengths-based-interventions/ 
  2. 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 
  3. 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/ 
  4. 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/ 
  5. 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/ 
  6. 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

  1. Chronically Capable. https://www.wearecapable.org/ 
  2. Conscious Crafties. https://www.consciouscrafties.com/ 
  3. Job Accomodation Network. https://askjan.org/ 
  4. National Organization on Disability. http://www.nod.org 
  5. The Work at Home Woman. https://www.theworkathomewoman.com/ 
  6. 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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