Too Sick to Be Believed, Too Autistic to Be Understood.
When I was diagnosed with Ehlers-Danlos Syndrome, I felt validated by the doctor who actually listened to me. That day, I felt at peace. What I didn’t expect was that the diagnosis would also bring social challenges.
Even though I finally had a name for my experience, I quickly realized a harsh truth: most abled people thought I talked about my condition just to get attention. And those were the nice ones—others straight-up called me a hypochondriac.
As the years passed, more diagnoses kept piling up, and I kept sharing my experiences online. Was I an activist? No. But I refused to hide what I was going through. Talking about my conditions felt like a way to raise awareness, and deep down, I hoped that maybe someone out there, struggling like me, would stumble upon my posts and find the answers they’d been looking for.
I was always open about my health—until last year, when I realized I’m autistic.
That discovery hit me hard. My chest felt tight, my stomach was in knots, and I couldn’t sleep. It was happening all over again: a diagnosis that validated my experience, but also one that would make life harder in a society that doesn’t understand.
I haven’t been able to come out as autistic yet. The fear of people's reactions paralyzes me. I don’t have a big platform; I’m just another small voice on the internet. But I already know how people around me would respond: Another diagnosis? Years ago, someone called me a “diagnosis collector,” and I haven’t been able to shake it off since.
If I wanted attention, I’d be faking conditions that people actually care about, not rare diseases no one’s ever heard of or being neurodivergent in a world that still barely acknowledges us.
I’m terrified of being treated worse.But I’m even more terrified of doing the one thing I swore I’d never do: hiding who I am just to make society—and myself—more comfortable.
