Top Posts Tagged with #speds

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

yes 👍

no 👎

Voting ended onMay 20, 2025

•18+ Adults Only

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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.

#ehlers danlos syndrome #my suspected types:#kyphoscoliotic eds #cardiac-valvular eds #spondylodysplastic eds #brittle cornea syndrome #kEDS #cvEDS #spEDS #BCS #<the types that cover my symptoms (not all are in one type 😭)#vent post kinda #i'm also sick and tired of every problem I have being EDS like omfg I get it you affect my body can we get on with the program LMAO

So calling someone the N word isn't considered Bullying, harassment, or racist to some folks. But my comment apparently was! Fuck this lame ass country singer and everyone who defended him! You #TRIGGERED pussies got in your bigot ass feelings again huh! 🤣🖕🇺🇸🔥 I'll be back on the 12th! Can't stop me! You all get what you fucking deserve. You goddamn #Speds https://www.instagram.com/p/CLD9oRYAalv/?igshid=4212yc2g42m1

#triggered #speds

Someone said I was empathetic... a person who has their own way of displaying empathy for others. Gee... that’s deep, and I feel like I’m already cursed with this $#!t to begin with. Especially stuff with SPEDs I knew along time ago, and my old roommate who was an RSO.

I just place myself in their shoes and I scare myself too much. Also why does empathy have to be so painful?

#theredhairing40 speaks #actuallyautistic #empathy #SPEDs #empathetic #text #random thoughts #night owl redux

Rose bushes, throwies and tags #melbournegraffiti #melburn #emptyspace #noemptyspace #speds

#speds #emptyspace #melburn #melbournegraffiti #noemptyspace