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 didnât 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 onesâothers 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 theyâd been looking for.
I was always open about my healthâuntil last year, when I realized Iâm autistic.
That discovery hit me hard. My chest felt tight, my stomach was in knots, and I couldnât 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 doesnât understand.
I havenât been able to come out as autistic yet. The fear of people's reactions paralyzes me. I donât have a big platform; Iâm 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 âdiagnosis collector,â and I havenât been able to shake it off since.
If I wanted attention, Iâd be faking conditions that people actually care about, not rare diseases no oneâs ever heard of or being neurodivergent in a world that still barely acknowledges us.
Iâm terrified of being treated worse.But Iâm even more terrified of doing the one thing I swore Iâd never do: hiding who I am just to make societyâand myselfâmore comfortable.
