30 Unexpected Coping Techniques That Help People Manage Ehlers-Danlos Syndrome


Living with the constant pain and discomfort of Ehlers-Danlos syndrome (EDS) can be challenging both physically and emotionally. Experiencing frequent subluxations/dislocations, easy bruising, gastrointestinal issues and/or heart issues can not only take a toll on your body, but may also lead to depression, frustration or mental exhaustion. While there are a number of management techniques those with EDS may use to minimize pain and physical symptoms, it is just as important to find coping techniques that help maintain your mental and emotional well-being.

To help those struggling to find relief, we asked our Mighty community to share the unexpected coping techniques they use to manage Ehlers-Danlos syndrome and its effects. Maybe some of the following can help you, too.

Here’s what the community shared with us:

1. “Focusing on acts of self-care. Between surviving each day in pain and battling to be heard or understood by doctors, it is important we use our spoons to look after ourselves too. Whether it is painting your nails, doing something crafty, going out for a meal with a loved one or occasional retail therapy, having a bubble bath, cuddling a pet or something else entirely, it is so important to love ourselves and show that through our own actions.”

2. “Being taught how to brace and splint your own injuries because seeing a doctor every time you mess up an ankle or a shoulder is expensive and time-consuming.”

3. “Shopping carts! Without them I would be on the grocery store floor sometimes.”

4. “I like to foster young kittens and puppies. When I’m having a bad day, mentally or physically, I know there are tiny mouths to feed every three hours, and it gives me the push to get out of bed. Plus there’s no better antidepressant than a teeny tiny purring kitten!”

5. “Talking to myself. Reminding myself to watch how I’m doing things, reminding myself not to hyperextend joints too massively, reminding myself I’m not a spring chicken, unlike my coworkers and my peers.”

6. “I call I friend. Usually a friend who can make me laugh and help distract me from the pain!”

7. “[I] learned all the names of the bones and muscles I could possibly have problems with (so basically all of them) so I can quickly and accurately relay info to medical providers.”

8. “The most unexpected coping technique I use is that even though I am happily married, I need to sleep in my own bed in my own room. I need space, a different mattress firmness and I have strange sleep disturbances for various reasons.”

9. “Bullet journaling! Sometimes having an invisible illness can cause so much frustration it almost becomes confusing. Talking about it to someone who doesn’t understand can be hard. My bullet journal helps me track my pain, medications and appointments, while also providing me a safe place to write down my thoughts and feelings and help me to wrap my head around this illness. (Pinterest is my best friend when it comes to organizing and decorating the pages of my journal.)”

10. “I started going without a bra entirely. My ribs shift out of place and hurt when I wear one of any kind it seems. So I just gave up!”

 

11. “Dancing! Nothing fancy, nothing choreographed, just pretending I know how to belly dance, no matter where I am. It lifts my mood and keeps me moving. My hips are a big problem, so if they start to lock, I shake them up. Sounds ridiculous but it works.”

12. “Surrounding myself with the love from my fiancé, friends and family. Nothing brings me more joy than being with them. Laughter is definitely the best medicine and even on my worst days my fiancé and friends make this whole journey a lot easier to cope with.”

13. “Spending an exhaustive amount of time maintaining a conscious awareness of where every body part is relative to my surroundings, and then calculating exactly how to move to avoid injury.”

14. “I read a lot! I figured out at a young age that when my body won’t let me go out and have fun adventures, my mind will. ‘Harry Potter’ is my favorite so when I’m having a particularly bad pain day I escape to a world of magic and endless possibilities!”

15. “[I] never make decisions first thing in the morning. This has been a weird one that helps me a lot. When I wake up I feel the worst pain/fatigue and before coping I would cancel plans and dread the day. Now I accept this and give myself an hour to walk around a bit, have some coffee [and] supplements and usually I feel better by then. If I still feel bad then I can cancel plans, etc. So yes, I gift myself an hour when I wake up to feel the pain out.”

16. “Photography. Even though I’m in pain after/the next day, taking pictures is my way of helping me forget I’m chronically ill.”

17. “Structured breathing is a huge one for me. I like to avoid pain meds where possible, so I find if I stop and control my breathing, it gives me enough time to calm and manage my pain.”

18. “I tend to make educational things, like PowerPoints. I currently have one I’m working on that a lot of people want to see when I finish.”

19. “Eating in bed. My SI joints slip out of place when I sit, so I’ve switched to eating in bed propped up on pillows to keep them in place.”

20. “Wearing makeup. It makes me feel beautiful and confident, hides the bags and dark circles under my eyes, helps me forget my jaw is out of place on one side of my face and has started to alter one side of my face. Contouring is a wonderful! I guess you could say makeup is my security blanket.”

21. “I draw a lot using either charcoal or pastels. I feel like I’m in a whole different world when I’m drawing. It allows me to ignore my pain momentarily.”

22. “I have hEDS which means my muscles and joints are in a lot of pain. I use KT tape to help support my joints and Bengay ointment which helps the muscles relax and relieve some of the pain in the joints. Also regular appointments with a chiropractor helps to manage the pain.”

23. “Volunteering with kids [who have disabilities]. I’m able to relate to them in a lot ways ‘typical’ people can’t. Seeing their joy in my understanding makes my life with EDS worth living.”

24. “The bedtime routine I have with my toddler. We take a bubble bath, then a shower to wash the bubbles off, then we read books. It helps me wind down and the soaking eases the pain.”

25. “Having my hair brushed, definitely! Sitting there and having someone brush my hair just calms me and relaxes me and takes my mind off whatever has been overwhelming me.”

26. “[I] realized I can’t sleep on a flat surface so [I] had two long foam wedges made for my bed. It’s great not waking up with inflammation and actually [feeling] rested.”

27. “Socializing feral kittens. I know it seems strange. But a good portion of the socializing process is just being in the same room as them. So even when all I can do is sit or lay in one place, I am still making a difference for them and changing the rest of their lives.”

28. “Training people around me to help put my joints in without freaking out. It normally only works with family or fellow EDSers. It really freaks people out when, for instance, during a doctor appointment, I’ll just dislocate a finger and casually put my hand over to my husband who puts it back in. I’ve seen numerous doctors go totally white when this happens.”

29. “Hugs from my husband! I call him my butter because he makes everything better.”

30. “Realizing after my diagnosis that I don’t have to push my body beyond its limits anymore to try and appease others. It’s OK to stop. It’s OK to say, no, I can’t do that today. I do what I can, but I often end up paying for it with pain and bed rest. So I choose my battles, so to speak. Now I know it’s OK if I can’t push as hard as everyone else. It’s not my fault, it’s because I was born with this. You have to practice self-care and be patient with yourself.”

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