22 'Habits' of People With Ehlers-Danlos Syndrome


Living with Ehlers-Danlos syndrome (EDS) can present a unique set of challenges. Your muscles may ache constantly, your joints may dislocate or sublux far too easily, and others may have a hard time understanding the often frustrating reality of your condition. This can cause some people with EDS to develop certain “habits” – things they started saying or doing in response to the physical and emotional symptoms.

We asked our Mighty community to share some of the “habits” they’ve developed – good or bad – while living with Ehlers-Danlos syndrome. Some of these may sound familiar to you, too. Let us know how you cope with EDS in the comments below.

Here’s what the community told us:

1. “I constantly fidget to keep my muscles engaged while trying to be stationary.”

2. “When my joints get stiff, I automatically crack them (which ends up grossing out everyone around me). Another habit I have is when I lay on my back, I have my legs folded under me. (I have to remind myself not to do that too.)”

3. “Swearing – every time a joint subluxes or when I injure myself. Sometimes a good verbal rant makes it feel better.”

4. “I look for handicap accessibility whether I’m in my wheelchair or not. Even walking I avoid steps and curbs because of the risk of dislocation.”

5. “I’m constantly popping my back, fingers, neck, knees, elbows, hips, everything to relieve the pressure.”

6. “Randomly doing squats everywhere because it helps pull my knees back in place. Also sitting on the floor in random places because I tire so easily and just can’t stand anymore.”

7. “Playing down actually how unwell or how much in pain I am. Because people can’t see, and rarely understand, I just pass it off as nothing. And honestly, I don’t think it’s ever felt like ‘nothing’ – it feels like everything.”

8. “Constantly moving/tapping/bouncing my legs, toes, fingers and arms to get things in place, to stop the numbness or tingling and to deal with the anxiety that comes along with all the pain. I rarely sit still and when I do sit, I have to constantly readjust from the comfy positions because in five minutes they aren’t comfy anymore.”

 

9. “My ‘dances’ to relocate or check for subluxations are probably my oddest. My worst is twisting my back to fix my hips.”

10. “I have a bad habit of popping my thumb out of place. I know it’s bad but I do it without thinking.”

11. “Apologizing for everything related to my condition. Even before I knew about it and had my worst symptoms (joint pain), I sort of internalized this notion that I must be an extra ‘needy’ or ‘dramatic’ person because I was always having strange problems that most kids didn’t seem to have… I got so used to feeling like a ‘high-maintenance’ person that I constantly apologized for everything about me! When I got married, my husband finally started getting angry at me for apologizing so much for ‘having needs.’ Now that I know about my EDS, especially, I am working on not apologizing for health problems I cannot control.”

12. “Subtly tensing my muscles/moving slightly when I stand so my blood doesn’t pool.”

13. “Apparently I’m careful to plan each movement I make. I know if I don’t something will dislocate and hurt like hell for days.”

14. “When I have a bad day, I watch Disney/Pixar/Dreamworks movies or my favorite series, ‘Avatar: The Last Airbender.'”

15. “I’m forever stretching and cracking my joints. Particularly my shoulders, spine, fingers, jaw and wrists. I arch my lower back up repetitively whilst lying on my back to flex my spine. Something down there clunks when I do which relieves that fidgety/achy feeling. I almost never sit in chairs normally either. I don’t feel right until I’m tied up like a pretzel with my feet under my bum. All of the above are terrible for me, but they’re either compulsions or things I do without thinking.”

16. “Not sleeping or getting up at all hours of the night because pain has woken me.”

17. “Keeping lists. Lists of things to remember when I’m out, things to ask for help with when someone comes over, places I can get around easily when I’m having a bad day but need to get out and even certain daily reminders I forget most often due to brain fog. Then there are the lists of symptoms, medications that work/don’t work, places I’ve stashed my braces out of sight (and therefore out of mind) and questions for doctors. Grocery lists and playlists and lists of all kinds!”

18. “Constantly fighting anxiety and depression, yet at the same time trying to be my regular happy-go-lucky self so I don’t have to explain again why I’m not smiling. All because I ‘don’t look sick.”’

19. “Pushing through the pain and overdoing things. I was disbelieved for so long and told it was all just in my head and I was too young to be in pain all the time, so I learned to keep going even when my body was telling me to stop. I struggle with finding my limits.”

20. “Every time before I lay down, I lay my lower back across the edge of my bed to pop my SI joints back into place. And after I eat or brush my teeth I push on my lower jaw to put it back in because it slips out.”

21. “Over-analyzing everything. It’s hard to tell if something is concerning or just a ‘normal’ EDS thing because it causes so many weird symptoms with every part of my body. I can’t just run off to the doctor or hospital every time I experience a new symptom, so I just sit with the anxiety or post way too often in my Ehlers-Danlos Facebook group.”

22. “Automatically checking all my fingers after writing, opening jars, cooking or carrying things. I’ve gotten so used to subluxing my fingertips that I have to check for clicks, otherwise I don’t notice them most of the time.”

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