Things People Who Have Ehlers-Danlos Syndrome Wish You Knew
If this is part of your life story, please share your insights! What would you like the rest of us to learn? What should we know about people in this community? How would you like people to interact with you? Should people ask questions? What’s the best way for people to learn about this? Do you have any resources (books, movies, YT videos, etc) that will give us greater understanding and empathy and kindness toward people who experience the same things you do?
If you’re not on this journey, we welcome you to listen, learn, and ask respectful, good-faith questions! Open-ended questions are highly encouraged, as they give people the space to share their unique experiences in their own words. While this is a safe space to learn about things you’ve never experienced, please remember to be sensitive, and avoid sharing harmful stereotypes or debating someone's lived reality. If you have a question, ask it with empathy. If someone gently corrects you, please be open to learning. Let's have a gentle, fun, friendly conversation where we support one another, because it takes all sorts to make a world!
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I’m adding a taglist to start, but this post is open to absolutely everyone! <3
@jesusredeemedme2425
Thanks for tagging me ❤️
@jesusredeemedme2425 Looking forward to this thread ❤️
Yay I do!
I’m not fragile. Don’t treat me like it. Don’t try to baby me or set boundaries for me. I know my inner workings better than you ever could, and it’s taken a lot for me to learn about it, so let me use my knowledge!
I frequently show up with my wrist braced or KT tape all over. I’m ok, I didn’t break anything, I just hurt. It’ll pass in a bit if I restrict the movement there. I just don’t like explaining that nothing’s wrong but I hurt anyways, sorry to all the people irl I get snippy with. I don’t feel like explaining this weird little thing in my body.
Can you please tell us what exactly this disorder is like? I’m not actually familiar with it. <3