Welcome to Tissue Issues, an advice column from comedian Ash Fisher about connective tissue disorder, Ehlers-Danlos syndrome (EDS), and other chronic illness woes. Ash has EDS and is very bossy; having an advice column is a dream come true. Got a question for Ash? Reach out via Twitter or Instagram @AshFisherHaha.
Dear Tissue Issues,
I’m a 30-year-old woman diagnosed with MS two years ago. I was an athletic, able-bodied kid and teenager. My symptoms only started a few years ago, but quickly became debilitating. I used a wheelchair and was mostly bed bound from 2016 to early 2018. At my sickest, I found comfort in online disability communities and became active in disability advocacy.
Now, I’ve finally found effective treatment and am in remission. I no longer use my wheelchair and am working full-time. I have my bad days, but overall, I lead a relatively normal life again. Now I feel kind of embarrassed about how vocal I was about disability stuff. Can I even call myself disabled when my abilities aren’t actually that limited anymore? Is that disrespectful to “real” disabled people?
— Disabled or Formerly Disabled or Something
I admire how thoughtful you are about disability and your identity. However, I do think you’re overthinking this one a bit.
You have a serious illness that is at times disabling. That sounds like a disability to me!
I understand your conflict, considering our societal view of disability is strictly binary: you’re disabled or not (and you’re only “really” disabled if you use a wheelchair). You and I know it’s more complicated than that.
You absolutely do not need to ever feel embarrassed for talking about and advocating for disability! It’s common and normal for daily life to revolve around your illness after a diagnosis, or something as life-altering as becoming bed bound and needing a wheelchair.
There’s so much to learn. So much to be scared of. So much to be hopeful for. So much to grieve. It’s a lot to process.
But process it you did! I’m so glad you found comfort and support online. We are so lucky to live in a time where even those with rare diseases can connect with like minds — or like bodies — around the world.
Of course, I also think it’s healthy and understandable to step back from these communities. Your diagnosis was a couple of years ago and you’re in remission now.
By now, I’m sure you’re an expert on MS. You’re allowed to step back from the online world and enjoy living your life. The internet is always there as a resource when you need it.
On a personal note, I’m also leading, as you put it: “a relatively normal life again.” Two years ago, I used a cane and spent most days in bed with debilitating pain from Ehlers-Danlos syndrome. My life changed drastically and painfully.
I was disabled then, but two years of physical therapy, healthy sleep, exercise, etcetera, and I am able to work full time and go on hikes again. So when it comes up now, I prefer to say: “I have a disability (or chronic illness)” rather than “I’m disabled.”
So what should you call yourself?
There’s no test or certification or guideline that determines what you can and can’t say about disability.
You strike me as a kind and considerate human being, and I can tell you’re ruminating deeply on this question. I give you permission to let it go.
Speak about your health and your abilities using whatever words feel comfortable to you. It’s okay if the words change from day to day. It’s okay if “disabled” feels more right than “has a chronic illness.”
It’s okay if sometimes you don’t want to talk about it at all. It’s all okay. I promise. You’re doing great.
You got this. For real.
Ash Fisher is a writer and comedian living with hypermobile Ehlers-Danlos syndrome. When she’s not having a wobbly-baby-deer-day, she’s hiking with her corgi, Vincent. She lives in Oakland. Learn more about her on her website.