29 People With Ehlers-Danlos Syndrome Explain What It Feels Like
Article updated August 1, 2019.
Ehlers-Danlos syndrome (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
12. “It’s like an old house, creaking, squeaking swaying, and popping in the night, the wooden walls and nails coming apart at the slightest breeze.” —London Elaine Ridenour
13. “It’s like riding a bicycle with very loose bolts. You have to hold it together yourself or else it will fall apart.” —Melissa Drennan
15. “The pain is like sand paper being wiped on the inside of your skin all the time.” —Tiffani Rinzel
16. “You cannot trust your body to do what it is supposed to do.” —Emma Stathopoulos
17. “It’s like trying to build a tower out of misshapen blocks, where the tower is your body and the blocks are faulty collagen.” —Courtney Simonds
18. “The hair on my skin hurts.” —Mary Carlson
19. “You feel like you are constantly disappointing people because you have to cancel plans at the last minute when you are in too much pain, too sick, or too depressed to leave your house.” —Lisa Allison
20. “A 3 on a pain scale of 1-10 is a good day.” —Laurie Bohanan
21. “I feel like I’m falling apart at the seams.” —Lisa Sinnott
22. “EDS is feeling ‘insane’ for years because people tell you there is nothing physically wrong when you know there is.” —Sarah Elizabeth Erwin Bloom
23. “You have to deal with the idea that your body is basically falling apart and there’s nothing you can do to stop it.” —Erin Geerlof
25. “Dislocations are like walking on glass, not knowing when you’re going to get cut but you know it’s inevitably going to happen. It sparks an unnatural fear that is hard to live with.” —Ariel Amberg
26. “The cruelest symptom of our illness is disbelief by medical personnel.” —Mary Carlson
27. “It’s like falling down the up escalator indefinitely while bystanders speculate about how you got there, what your injuries might be, and if you really even look hurt.” —Jess Elsen
28. “It’s like having everything in your body short circuit.” —EmJ Jackle-Hugh
29. “Day to day I feel like a stretchy rubber doll that’s working hard to stand up straight; bad days feel like I’ve been hit by a car, but the good days make me feel like I can still conquer the world!” —Beverly Wilson
Some answers have been edited for brevity and clarity.