09/06/2026
EDS has a face in most spaces online.
It's usually not mine.
Most of you reading this know what it feels like to be dismissed. To be told it's anxiety, drama, or just getting older. To fight for years just to have someone take you seriously. That dismissal is real and I've read your stories and I believe every one of them.
And I want to talk about what it looks like when that dismissal has an extra layer on top.
I got diagnosed at 12. Not because the system worked perfectly. Because my body made itself impossible to ignore.
I think about how many bodies don't get that moment.
The EDS community online is predominantly white, predominantly female, predominantly from countries where you can self-refer to a geneticist. I don't say that to make anyone feel guilty. I say it because it's true and because the people missing from that picture deserve to have someone name it.
For a Black man who grew up in an RDP house, who slept on a sponge on the floor, whose parents couldn't pronounce the diagnosis and didn't know what to do with it, finding yourself in this space is strange. You recognise the symptoms. You don't recognise the life.
And the gender piece is its own silence.
Women in this community can ask each other how EDS affects their cycles and get hundreds of responses from people who've lived it. If I ask how it affects me as a man, I'm throwing a rock into the ocean and expecting it to float back. The lived experience just isn't there yet. You end up asking doctors who have knowledge but not lived experience. Everyone in this community knows those are not the same thing.
I see comments every week from people of colour describing being dismissed in ways that have an extra layer to them. Not everywhere. Not always. But consistently enough to be a pattern worth naming.
I'm not saying this community is unwelcoming.
I'm saying it's incomplete.
And I think the people in it are good enough to want to change that. Because you've all fought too hard to be seen to be comfortable with anyone else being invisible.
To the Black or Brown person sitting somewhere right now with pain that has no name yet: you're not alone. Keep looking for answers. I hope they find you.
đź’™
