#cveds

[disability-and-cats]

question for people with EDS: do you have translucent skin?

yes 👍

no 👎

Voting ended onMay 20, 2025

[the-autistic-system]

Doctors have always told me I'm the worst case of EDS they've seen in their careers, and I had genetic testing done back in 2016 (results came back inconclusive, my guess is they tested for the more common types and didn't find what they were looking for, but they did say they were certain I had EDS).

I've recently started looking into EDS again, refresh my memory of the disorder and its types, and as I'm going through the types I'm certain I have a few of the rarer types. I'm likely 1 in a few million. So yeah I'd say I'm bound to be the worst they've seen, some too scared to actually help me bc they fear making things worse and I get it, but it leads to medical gaslighting and conjures my cptsd from medical maltreatment. I've had great doctors too, but even they have said they can only do so much.

Really makes me feel like a shepherd sometimes, I can recognize small symptom patterns and lead those with less severe cases to getting a proper diagnosis and can recommend treatment from experience, I can provide an understanding ear to listen to struggles, trials and tribulations, of having EDS.

But I am such a special case that help in my area is limited, we can't always afford treatments, and I don't really have anyone to relate to with certain problems. I'm weary of entering EDS spaces bc I've given others anxiety about their own EDS in the past bc mine is so bad, what if theirs gets that bad- it likely won't be as severe but it will progress, thats the nature of these syndromes.