Does anyone else's EDS clearly affect their appearance? I see a lot of people call it an invisible disorder, but my experiences have been anything but. I have a marfanoid appearance, small ears, very fragile skin, etc. Maybe it's because I have cEDS and not hEDS like most EDS advocates I've seen? But I just feel very othered by society. I struggle with low self esteem because of it all. As a kid, I saw myself as an alien because other kids said I looked "freaky".

I'd love to feel less alone in being a bit oddly-shaped.

I think I'm otherwise relatively lucky because I haven't had too many medical complications because of EDS, besides just being a bit more careful around sharp things. I don't even see myself as disabled, but society sees me as disfigured

Ehlers-Danlos Syndrome (EDS)

Edema & Anasarca

View all

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.