(EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues.
EDS affects somewhere between 1 in 2,500 to 1 in 5,000 people in the United States, but understanding of the disorder tends to be limited among society and medical professionals. Some individuals with EDS remark that their doctors don’t even know how to spell it, and the most common analogy likens the body of someone with EDS to that of a house built with faulty materials.
“Our EDS community formed out of a need to understand ourselves even when medical professionals did not,” a spokesperson for the Ehlers-Danlos National Foundation told The Mighty. “Awareness about EDS leads to better lives. Although EDS is not curable, early diagnosis can limit long-term damage as problems can be treated as they arise, and sharing information in our communities about what has worked for each of us can help all of us.”
We teamed up with the Ehlers-Danlos National Foundation to ask their Facebook community how they would describe the disorder to someone who doesn’t have it.
Here’s what they had to say:
1. “It feels like I’m 80 when I’m 40.” —Kimberly A. Bates
2. “It feels like having the flu all the time.” —Linnie Lin
3. “I feel like an alien on a planet where I don’t belong.” —Yolanda Smith
4. “It feels like I’m slowly disintegrating into particles…” —Sarah-Marie Zeraphic-McFarlane
5. “It feels like my body is falling apart at every joint.” —Breanna Griggs-Meloy
6. “It’s like a big pair of knickers with no elastic left.” —Christine Di Ciacca
7. “It’s like having the flu, a hangover and getting hit by a bus all at the same time.” —Irene Beck
8. “I feel like a marionette and someone else is in charge of the way I move.” —Nicole Hess
9. “It feels like your body is trying to turn itself inside-out, piece by piece.” —Aria Eragon
10. “It feels like I’m made of rubber bands that are about to snap.” —Katie Thomson
11. “It feels like you’ve lifted a car off someone all day every day.”—Melissa Conder