30 Things Only People With Ehlers-Danlos Syndrome Tend to Understand


Does anyone truly “get” Ehlers-Danlos syndrome (EDS) until they get it? The EDS experience is so unique that it’s hard to imagine anyone really understanding the everyday challenges, victories and even comical moments a typical EDS zebra experiences unless they also deal with them. After all, there’s no one who can relate to the pain of dislocating a joint while simply standing up, or the confusion of seeing yet another bruise pop up and having no idea where it came from. But that’s just a day in the life of an EDS warrior!

If commiserating/crying/laughing with your fellow EDS-ers helps you cope with the difficulties, then see how many of the following 30 things only people with EDS understand (shared by our Mighty EDS community) you relate to. At the very least, hopefully the list below will help show you how strong you are for dealing with these unique challenges every day.

Here’s what our community told us:

  1. “The faces people pull when you casually relocate a joint in front of them, especially when you ask them to help (e.g. ‘hold my wrist while I put my shoulder back in’) are priceless, especially the first few times, not as much fun once they’re used to you.” — Abi H.
  2. “Team mysterious leg bruise!” — Michelle D.
  3. “The brain fog. I once tried to put hand soap on my toothbrush to wash my hands.” — Christa R.
  4. “The happiness when a doctor has actually heard of EDS and the disappointment when that doctor subsequently refuses to believe it means anything beyond ‘super bendy.'” — Courtney J.
  5. “That I crack more than any person I know, and it’s to relieve the pressure whenever it builds up… So my back, neck, knuckles, elbow (I’ve always been able to pop that one), hips, knees, ankles, toes. Sometimes I’ll just pop moving around.” — Celaena W.
  6. “On the bright side? I’m 31 and I look 19. A… curious one? Every night I gather my things, kiss my mom and prepare to go into battle… I’m not going to war, just to take a shower, but I know there is a possibility that I will faint and break my neck and not come back.” — Mar M.
  7. “When someone asks how you are or what’s wrong with you… and you actually mean it when you ask them how much time they have… because your plethora of issues takes so long to explain!” — Kathy G.
  8. “‘No, no, really I’m fine!’ Hobbles away dragging one leg behind me.” — Charie R.
  9. “The inner fight you have inside with yourself knowing you need help or an assistive device like a wheelchair but wanting so badly to not need it and not have to deal with the social stigmas that come with it.” — Christine S.
  10. “Levels of energy can shift multiple times throughout the day making it difficult to make plans, run errands and manage the chronic pain and exhaustion effectively.” — Katie S.
  11. “You know you have EDS when you roll more joints than Snoop Dogg, and I mean your ankle, not your medical Mary Jane.” — Ray Lynn E.
  12. “Frustrating having to change your whole life plan when you are diagnosed in your late 20s. I was just finishing grad school when I was diagnosed and now I have to change my whole life, since I literally feel my body fighting against me every single night and day.” — Melissa O.
  13. “I never have an itchy spot that I can’t get myself. I’ve never needed help doing up a zipper because I couldn’t reach. Because my fingers weren’t working, yes, but not because I couldn’t reach it!” — Karly B.
  14. “The guilt that you feel when you have to cancel plans, again, because you don’t feel good. It’s a very unique mixture of feelings. It’s a combination of wishing that you felt well enough to go and feeling like you’re disappointing your friends by being sick. It’s something that we EDS-ers, obviously, can’t change or control, but the guilt is still there.” — Alley S.
  15. “Good days still aren’t exactly ‘good.’ Good days are just better than our bad days. And we still love those days.” — Catherine M.
  16. “Your boyfriend trying to pull you along to show you something and dislocating your wrist and shoulder. It’s just not fair.” — Gullu K.
  17. “It really doesn’t take much for something to dislocate — a sneeze, chewing, opening a bottle — and the pain doesn’t go away once it resets.” — Susan F.
  18. “It’s frustrating how people assume they have a right to know your medical history when you start wearing braces or using mobility aids. It’s a never ending barrage of ‘What did you do to yourself?’” — Karly B.
  19. “A positive aspect of it is when you are able to make an amazing comeback! Or when you’re able to prove your doctors wrong!” — Lauren B.
  20. “When you make your physical therapist cringe!” — Staci H.
  21. “Half the time I sublux something when trying to pop something else back in.” — Maura G.
  22. “My labs show that I am an exceptionally healthy human being… but I wear a hip brace and use a cane.” — Tab M.
  23. “The frustration of what to do to help yourself — like many here I have numerous chronic illnesses including myalgic encephalomyelitis so exercise is tricky, if not causing more damage. I’m stiff and sore, do I do things to relax my muscles, but then the joints pop out more. Do I try to build up my muscles, but then the fatigue is debilitating and the pain gets unbearable!” — Louise M.
  24. “Knowing more about your rare disease(s) than most of your ‘specialists’ do!” — Ashley L.
  25. “Bad proprioception. I once punched a cactus reaching for my phone.” — Sara M.
  26. “It’s sad that I am attacked for having to utilize the [disability] parking because I don’t look like my disability! But you don’t look sick!” — Akamai L.
  27. “Having to gently educate medical professionals about the condition, so as not to bruise their egos and have a negative visit.” — Stacia B.
  28. ” Having to ask ‘Is this normal?’ all the time, to which my husband usually responds, ‘Uh, no, that is not normal.'” — Kari R.
  29. “Wanting to nap after taking a shower!” — Melissa P.
  30. “My positive is that life has had to slow down drastically. At first that was really hard to get to grips with, I was that ‘out all the time’ person, and almost overnight it dropped to bed bound. In the past 11 years I’ve learned to really savor time with loved ones and some friendships got exponentially stronger because I had more time to work on them.” — Louisa C.

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