25 Secrets of People Who Can't Work Because of Their Rare Disease

“They’re just gaming the system.” “People who don’t work are lazy.” “It must be fun to have the whole day to yourself.” So many people who are unable to work because of their rare disease have heard insensitive comments like this. When you’re healthy, you might not realize the toll health challenges can take on a body. And having to choose between work and maintaining your health is a demoralizing and painful decision to make. There’s a whole side to life people don’t see in the media, and sometimes even from our own families and friends, when you can’t work because of illness.

We partnered with Global Genes, a leading non-profit focused on supporting people and families facing rare disease, to ask our communities: “What’s one secret you wish others knew about not being able to work because of your rare disease?”

Here’s what they had to say:

1. “Being unable to work isn’t fun and games like some think. I spend my days with multiple conditions flaring up at the same time, which makes me feel miserable. I spend my days on the phone calling doctors, scheduling appointments, tests, ordering med refills and pushing meds and IV fluids through my central line just so I can get out of bed and attempt to function. I fought seven years to get SSI and have to live the rest of my life with my mom. I wish I was having fun like people often think I am.” – Kristina K.
2. “The loss of independence is devastating.” – Rosemary R.
3. “I wish people knew how hard it was to live off $600 a month. I wish they knew how heartbreaking and devastating it is to not be able to put anything into society. I wish they knew how much of an impact not being able to work and pursue your dreams has on your self-esteem and happiness. I’ve struggled with depression due to my chronic illnesses all my life, but nothing is more depressing than having to be dependent on other people. Nothing is more heart-wrenching than knowing I’ll never be self-sufficient and able to provide for myself. I still can’t accept that. I don’t think I ever will.” – Harley B.
4. “The worst part is when people, mostly my friends, don’t understand what it’s like for me and don’t understand why I can’t do jobs like they’ve done. They don’t realize that I would give anything to be normal and be able to work at a ‘meaningless’ job, but my body can’t handle it. I have Ehlers-Danlos syndrome, and my joints pop out of place all the time. I’m always in pain; sometimes I can’t even walk without limping. I would love to be ‘normal,’ but I can’t. Along with the lack of understanding from people, there is also a lot of guilt, shame, and depression because I feel so useless at times and I hate it. It’s not actually fun not being able to work, it’s emotionally painful and lonesome.” – Jennifer L.
5. “I’d rather be working than sick all the time, having almost no life and going to endless doctor appointments.” – Stephen F.
6. “I feel constant guilt about being a financial burden to those who love me. I would give anything just to be able to work even a few hours regularly.” – Adrienne S.
7. “Most people never know what they want to do when they grow up. I knew as a young adult that I wanted to be a hairstylist, and God gave me a gift for it. Once my disease got worse, I could no longer work.  I had to surrender to it, and ended up closing my salon after 21 years. It was a huge loss. A loss of income. A loss of friendships. A loss of purpose. A loss of human touch. A loss of independence. A loss that I still am grieving over.” – Wendy E.
8. “Friends, family, and acquaintances simply forget you exist. In their presence at a dinner or even coming over to your own home, they talk with each other and ignore what you are saying, particularly because you’re in a wheelchair. You are viewed as ‘non-productive’ just because you do not have a traditional or any job due to rare disease debilitation. You are treated as a non-person, as a piece of furniture who has no right to speak, laugh, or smile. You are talked down to by friends who never did this before. They treat you like a child or like you’ve lost your mind in spite of the fact your intellectual capabilities are top notch. It seems like although you can offer them a great deal of knowledge and insight about the world, if you do not do it in an office, what you have to say no longer holds meaning.” – Angela D.
9. “It makes me feel like I’m a burden and a failure. I would rather be healthy and working and providing for my family instead of sick and at home.” — Brittany N.
10. “That there’s nothing I would love to do more than get my career back. Stop telling us how much you wish you could just ‘stay home all day too.’ This isn’t a vacation for us. Being this sick isn’t an easy way out of work. It makes us feel useless and lazy, even though we absolutely want to be able to go back to the work we love.” – Shannon P.
11. “I wish people understood that it’s not like you all of a sudden have a ton of free time. Chronic and rare illness is its own full-time job. I’m juggling meds, doctor’s appointments, physical therapy, and paperwork. ‘Typical’ responsibilities take more time. It takes me almost two hours to grocery shop. I have to rest before and after a shower. I have to rest between making food and eating it. Being sick is the majority of my life.” – Sarah A.
12. “You find out who your true friends are. I watched friends I had for years condone me for not working. To hear things like ‘You’re not trying hard enough,’ or ‘It’s mind over matter,’ really hurts. I may not look sick on the outside (I have a primary immune disorder and Ehlers-Danlos), but if you could be in my body one hour you would see that my only work right now is fighting my illnesses.” – Gwen M.
13. “I miss my quick intellect, and believe it or not, the stress, pressure and social aspects of being a part of making knowledge and fostering beautiful educated minds. I’ve taught college engineering courses as a doctoral fellow down to 6th grade technology, while being the department chair all for 15+ years, and loved it. Now I can’t stay focused and have difficulty remembering. I used to think people with my skill could still work if they were disabled. I’m so sorry and so very wrong. Pain and medications so easily tip the scale. The mind is a precious gift and it’s my greatest asset I fear I am losing.” – Katrina O.
14. “You will never judge me more than I judge myself. The amount of times I’ve had someone say to my face that I was ‘living the life,’ (i.e. not working) I literally had to fight back tears before explaining that I would give anything to go back to work and be independent again. Becoming chronically ill meant giving up so many formative aspects of my identity and the future I saw for myself. I am a dependent person for the first time in my life. Why on Earth would I choose this?” – Olivia L.
15. “That there are a number of supportive groups out there for those who aren’t working due to illness. Seek them out so you don’t feel alone. Also don’t research your disease to the point of scaring yourself. Oftentimes the worst is out there, but there are many many positives that one needs to consider in spite of it. Everyone’s situation is different. Just because it didn’t work for someone else, doesn’t mean it won’t work for you.” – Patty S.
16. “I feel like a burden. It’s lonely, and I can’t do anything I once enjoyed, either. So it’s not like I’m out there having fun. My life is just going to doctor’s appointments. It doesn’t mean I’m on disability either, so I’m completely dependent on my parents for help, and on what I managed to save before I could no longer fight through each day.” – Angel M.
17. “I wish people could understand how differently my disease affects each person. Just because some people don’t have pain or live a perfectly ‘normal’ life, doesn’t mean it isn’t excruciating for me. We may all be in the same crayon box. But we aren’t all the same color.” – Kathryn A.
18. “Living on disability and welfare often means living in poverty. Living in poverty means a lack of control and lack of options that others take for granted. It is dealing with invisible discrimination and disrespect. The lack of security means being vulnerable to manipulation, exploitation, and abuse.” – Elanie L.
19. “There’s actually a period of time when you go through the entire grief process. The loss of ability to work (or even if you have to severely reduce it) does have the same effect of losing a loved one. We’d love to work and many of us are forced to leave work we were really attached to. We also have the loss of the social interactions that come with working, meaning the loss of work friends and “work family.” And just like grieving over death, it can take a very long course, jumping around in stages, and even re-visiting stages more than once. It’s hard to navigate your way to the ‘acceptance’ stage when most rare diseases aren’t researched enough to have predictions on their prognoses and whether there’s any chance of finding the right treatment to slow it down.”– Cole K.
20. “I am on SSD. I was a registered nurse for 20+ years. I want people to know that I worked for my disability. I paid into it. It is a benefit. It is not a handout.” – Kathy A.
21. “Much of my identity and sense of worth came from my job as a ballet teacher. Now I can’t, and I feel a piece of me has been ripped out. Jobs are not just money-makers.” – Juul T.
22. “It’s so isolating. Time alone is great, but too much time alone is, well, too, too much!” – Lisa A.
23. “Working is not only a place where you earn money to buy things you need, like food, clothes, and a home. It’s the place you get validated, where you get acknowledgement. You develop self-worth by having tasks to do and satisfaction by competing them. You get to interact with others, have eye contact, hear your name — most don’t understand how it feels not experiencing this. People ask you things and you get to answer. Having a job is existing. It’s validation of your existence, your person and your abilities. You get to be part of something. You get to grow and develop. When you’re not able to work, it’s easy to lose all of this.” – Elinor B.
24. “The insurance, paperwork, doctor visits, waiting, more paperwork, applying for disability, is a job in itself. ” – Jenny K.
25. “The day I had to stop working because of my rare disease was heartbreaking. I had gone through so much schooling, and was still paying off so many student loans that I thought were worth it so I could have the job I dreamed of. All of that was lost the day I had to stop working. However, since that day I have come to realize that it was the best decision for me. I’m healthier now that I’m not pushing myself past my limits daily just to keep up with work. I’m still able to reach out to others who are struggling, and use my skills I learned through all that schooling to help others decrease their suffering. I am able to care for myself when I need to, and I’m not tied to a schedule. I’m able to make all my doctor appointments without canceling due to work commitments. Yes, I miss working every day. I miss the joy of contributing to society and to my family’s finances. I wish I could help my husband more. We’ve had to make changes and sacrifices because I can no longer work. However, when we take these hurdles life throws at us and turn them into something positive, we become a contributor to society and to the lives of others again. It may be in a different way than we had imagined, but sometimes different is what we need to survive.” – Marie H.

Are you unable to work because of your rare condition? What’s one secret you wish others knew? Let us know in the comments below.