5 Career Paths That May Be Great for People With EDS
Article updated September 5, 2019.
I vividly remember the moment when I realized I would never get back to my old job working full-time as a lab technician in research. In my case, Ehlers-Danlos syndrome (EDS) related neurological symptoms started abruptly, and from that moment, I was more on sick-leave than at work. I occasionally started again, just to realize that my body wouldn’t agree. It quit functioning, and left me with one thought: What now? I had never spent a second to think about what I could do other than working in a lab nor had I thought of the possibility that I would be living from governmental support when I was only 24 years old. But my EDS didn’t care too much about my struggles to accept my new self.
Over the years, I kept going downhill health-wise, and it always felt like when I found a new task, a new hobby, just something to feel useful, I got hit by a new symptom and had to find something new. When I figured out I loved writing more than anything, I started to search for degree programs that were flexible and accessible enough to fit my needs, and also affordable as someone living from disability. I can hardly describe how frustrating those six months were until I found the one and only program allowing me to participate. And now I am studying journalism which is the best thing that has happened to me for a very long time. I am sure most of you can relate to the feeling of losing your identity due to EDS sometimes.
And I know all of us are masters in organizing our lives and reinventing ourselves every day because our symptoms can shift so quickly, new issues might develop, and all this in the blink of an eye. However, the fact that we had to adapt one way or another to a different life situation might be something another person in the EDS community can benefit from.
This is why we asked our community what kind of jobs had been good for them, and whether there were any companies or fields of work they found to be a good fit for their health needs. If you’re trying to find a line of work that works with your EDS, perhaps these ideas will provide some inspiration. And please share in the comments if you have any careers or jobs you’d like to recommend!
Haven’t we all wished at some point that our doctors, nurses, medical assistants, or physical therapists would genuinely feel what we feel? They all do their best to try, but without having EDS themselves, it might be hard to fully relate. However, working in the healthcare sector as someone who has EDS, you could be this person we all sometimes long for.
“I now work as an employee at a clinic. I do ‘special projects’ and work the hours that I can, and my boss is amazing at working with me and my health needs.” — Saylor A.
“When I was working, I worked for an insurance company. I answered phones, took payments, insurance binders and cards. It was a fun job!” — Melissa S.
“I was surprised at how easy my medical coding and billing course was. I even got an email from my professor saying it wasn’t necessary to memorize all the medical terms in one sitting. I wrote him back, ‘I already knew all of those.’ Being forced to become my own medical advocate and figure out my own diagnosis has finally paid off on my homework.” — Brittany N.
“I’m studying to be an assistant nurse. I’m 16 and in [school], three years to go. I don’t know if my body can make it work, but I want to help and take care of people.” — Tilde B.
“I’m now a nursing student and looking forward to my first placement. It’s my dream.” — Jerrica J.
“I work as an insurance auditor. It’s full-time with benefits, and completely work-from-home. I have a fairly flexible schedule, and they understand when I have to go to doctor appointments or physical therapy. I worked in retail for a number of years, but it was really taking its toll on my body!” — Megan E.
The healthcare sector is very broad, and it offers jobs for most abilities. You can become a medical assistant and help people with chronic illnesses just like yours, or if you can tolerate more physical exertion, you could apply to become a nurse or nursing assistant, which is also available as an online course. And in case you cannot physically be present anywhere, you may work remotely for an insurance company, for example, at Aetna or Cigna. As Megan described above, you may want to look into becoming an auditor, for example, at The Hartford.
Just recently was I told by a friend who lives with a disability that she wanted to become a teacher at the moment she realized there was not one teacher with a disability at her school. She felt like she should be the person to teach children awareness about her disability and others. Our community has a lot of knowledge concerning tolerance, respect, empathy, and kindness to share, and I am sure the students will very much benefit from a teacher living with EDS.
“I work as a science, engineering, technology, math (STEM) teacher in both school and outside of school settings. I’m able to set expectations with my students that help them learn to take more responsibility for their work, especially on days where I can’t move around much. And I have a spare seat near each table, so I don’t have to crouch down to get to students levels. Teaching with EDS is a challenge, but thankfully I find students want to help more often than not.” – Skyler K.
“The school I am working in have been amazing.” – Kelly S.
“I worked for years in childcare. It wasn’t real physical, so I didn’t have any issues with pain unless I was already injured. I loved it, and the kids I had were the best. I hope to be able to go back to being able to work with kids in some way.” – Jennifer L.
“Since I was 9 years old and discovered what biomedical engineers did, I knew that was what I wanted to be when I grew up. Fast forward nine more years in the midst of applying for the necessary Bachelor of Science (BSc) degree, I got turned down by occupational therapy because of my EDS. All my doctors and the university doctors said it was a bad idea. Three years of heartbreak later, I’m studying a degree in Children Services and Young People, working as a Youth Worker in a holiday club and volunteer as a Girlguiding leader (a bit like Girl Scouts). I’m so happy. Kids are really understanding and curious, I love how they ask questions about my braces or why I take medications — something most adults are too shy to do. It’s hard work emotionally, but I love knowing I make a difference to the world each shift.” — Mattea S.
“I teach piano and mini musician classes. So fun and short and sweet, plus I can arrange breaks between classes if need be.” — Nìcole M.
“Working in schools has been really good because it doesn’t cause any extra pain. The kids are great, and it’s really rewarding.” — Jerrica J.
“I needed to find something to work from home, so I started working for VIPKID! VIPKID is a company that hires people to teach English to children from China online. It’s fun and pays well, all you need is a four-year-degree (in anything) and a good internet connection. I was extremely hesitant because it was an online job, and I wish I hadn’t been; it’s the best job I could ever imagine, and it is so rewarding! I feel excited to get up and ‘go’ to work. (Which is walking 20′ to my desk). They’ve also been extremely understanding with absences due to my health; I just had to scan in a copy of my doctor’s note.” — Elyse B.
Working with children — whether in teaching or childcare — is always rewarding on a personal level, but what’s even better is that it can be adapted to your physical limitations. As a private teacher, you can create your own schedule that works for you. You can teach online or in class, you can sit, stand, or maybe even lie down depending on your workplace, and, most importantly, you can teach the youngest generation how to grow up to be a tolerant and loving human being.
You can obtain a teaching credential (required for becoming a classroom teacher at a U.S. public school) through online or in-person programs. However, many U.S. private schools do not require teachers to have a teaching credential, so do your homework and search for opportunities at private schools in your area! Depending on where you live, working in childcare might require a certificate which can be obtained online. Online teaching jobs, for example, if you teach a second language, may not need any specific degrees. Companies that hire teachers for many languages are, for instance, Live Lingua, italki, and many more.
And one job idea I found particularly interesting was becoming a tutor for homebound children. Why not help a child that is severely ill and cannot take part in normal school activities?
3. Freelance Writing
For me, writing is freeing my mind. It helps me to cope with my deepest worries that form around my life with Ehlers-Danlos syndrome. But besides the healing effect for my mental health, it can also be a career path that offers flexible hours, money, and can be adapted to almost every need. I am writing mostly lying on my couch with my head supported, my feet elevated, and sometimes I even just dictate text to my phone if I don’t feel well enough to sit. The world needs more writers with disabilities because we are the only ones that have the necessary experiences to realistically present disability in the media.
Other possible options are, for example, technical writing. Technical writers prepare manuals and instructions and can work remotely from home. Pitching stories to many magazines is free and doesn’t require any special education. If you mainly write about your experiences with chronic illness, you could try pitching your work to Chicken Soup for The Soul if they have an opening for a book in that area. One of my favorite publications is the New York Times Modern Love column. Some of their pieces are centered around illness. Unfortunately, I have never been selected for publication, but maybe you will?
4. Higher Education
Some careers might benefit from getting another or a higher degree to have better chances to get the accommodations you need. You could, for example, apply for a paid Ph.D. program, so while you earn a doctor title that also increases your income in the future, you will be paid for doing so.
Or you could look for a Bachelor or Master program which, fortunately, are now also offered as online and/or distance degrees for many professions.
Did you ever wonder why I study in Scotland? It’s because I researched for a long time, and the journalism program at their university allows me to study from anywhere in the world to an affordable price and flexible enough so I can physically manage it. So don’t look only in your country, look for distance degrees all over the world. They might be more affordable. I even found an online distance-learning Ph.D. program.
Another helpful tool might be scholarships to pay for higher education. I am not aware of a scholarship specifically for people living with EDS, but there are many others for people living with disabilities. I, for instance, found a scholarship dedicated to women in media living with a disability. I was not chosen, but I tried. There are many options.
And in case you just feel like watching or listening to some lectures, Harvard, MIT, and other universities offer recorded lectures free of charge.
5. Social Work
As someone living with chronic pain and permanent symptoms, our community might be made for jobs in the social field. Having empathy for others who struggle, and at the same time working with colleagues who understand our own problems, could be a rewarding career.
“I have worked in the social work community for a few years now, and just recently finished my Master of Social Work (MSW). I recommend this path because most of the individuals in the field understand the need for us to have accommodations in the workplace.” – Katie P.
Most jobs in the social sector do require a MA degree in social work which makes sense considering the highly sensitive work those people have to do.
I know, some of us may be unable to leave their house. However, there are other possible career paths to explore.
You could start your own business like this member of the community:
“I have my own photography business! I’m my own boss with my own hours, and most of my clients have been family and friends who are very understanding of my limitations. Doing photography is something that I love, so having my own business is perfect for me!” — Michelle K.
Or work from home, like this Mighty contributor. Remember that many jobs, in many career paths, offer work-from-home opportunities, so always keep your eye out for remote jobs in the field that interests you.
“I’m a content creator on a website called Twitch (like YouTube but live). I stream myself playing video games and relaxing stuff like coloring in coloring books. I’m able to make my own hours, stand/sit as needed, and stream for as long or short as I want/need. I also get to teach empathy and spread awareness about my conditions as well as chronic pain/invisible illnesses.” – Christine S.
I know sometimes it gets frustrating because it seems like there is just no option that fits our need, and some of us might be too sick to work at all, but for me, it was incredibly important to feel like a part of the community and to be somehow useful. It’s the small things that count, too! Call a fellow EDSer and let him or her know they are not forgotten, post on Facebook and tell people about EDS, or donate whatever energy you have to an organization. Whatever you choose you: We all know you are doing the best you can! Let nobody doubt that.
Getty images by dusanpetkovic and dolgachov