Weighing the pros and cons of disclosing my disability online
The thing about visible disabilities is that you can’t really hide them. You can try, but there’s only so much you can do when it comes to a big honking wheelchair.
The internet, however, is a completely different story. There’s a freedom to it, a flexibility, that you can’t get from real life. You can be whoever you want to be online. For people with rare diseases, that kind of liberation can be exhilarating. The real world doesn’t give us much of a choice when it comes to our disabilities, but the internet is full of options.
I’ve always been open about my disability. Offline, I didn’t have much of a choice; online, I just chose to be honest. I didn’t blast it beyond a cursory reference in my bio, but I didn’t lie, either. If someone asked, I told them the truth: I have SMA, a rare disease that affects my body in myriad complex ways.
I quickly found it was easier for me to connect with people online. Offline, I’m awkward and unsure of myself (though I’ve definitely gained more confidence as I’ve gotten older); online, I’m thoughtful and, I hope, easy to talk to. There’s no wheelchair twisting me into some unrecognizable shape. I’m just me — whatever that means, whatever that looks like at the time.
Disguising the truth of me
Video games are the only activity where I conceal my disability. I don’t mean to; it just doesn’t come up in conversation. Most of the people I play with are ignorant of my condition, which is honestly what I prefer.
Years ago, when I first got into massive, multiplayer, online role-playing games, I was romantically interested in someone. We’d been chatting for several months, and I felt it was time to disclose my disability. I was already nervous, but things only got worse.
It wasn’t the disease that unnerved him; it was what the disease meant. He expressed concern that I would die from SMA. I told him I was stable, but nothing I said seemed to dissuade him. He was convinced and ghosted me less than a day later.
That experience set the tone for all future disclosures. Since then, I’ve had some great encounters and some not-so-great ones. Every time, I’m terrified that people will leave me.
Weighing the pros and cons
In an ideal world, the great encounters would outweigh the not-so-good ones. With every disclosure, I’d feel a little surer of myself, a little more trusting of the people in my life. But it doesn’t work that way.
I’m confident in who I am. I know that, no matter what, I’ll be OK. But I still struggle. Just the other week, I found myself weighing the pros and cons of disclosing my disability. I wanted to be honest. I wanted to tell the truth. But I’ve seen the consequences firsthand. I know the hurt of watching someone you thought you could trust walk away.
It went without a hitch. We’re still friends, and nothing seems to have changed. But there’s still that question in my heart: How much is too much? At what point does my disability become too much to handle?
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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