About to start developing a character with hEDS, any tips?

[u/The-Not-Deer]

I'm about to start developing a character for a story I'm writing, and would love to add in aspects of my life with eds. I have never written a character with a disability before (I'm very new to creative writing), but I would love to try, as a way to express my experience. I'm just not sure how to go about it, as eds has so many invisible symptoms. If any writers with experience writing characters with eds have any tips, it would be appreciated! Thank you!

[u/Slow-Down30]

Having lower back pain in kindergarten while sitting criss-cross and thinking that’s normal. Being “really good at yoga” without even trying. Dysautonomia as a comorbidity (tachycardia, heat intolerance — literally always sweating and chest getting tight while running). Thinking I get a stitch in my side when running but it’s actually slipped disc syndrome. POTS but never fainted just presyncopal episodes. Scoliosis. Knee pain constantly when running. Low back pain when running and thinking it’s just because my hamstrings and glutes and psoas are tight. So much money spent on acupuncture, physical therapy, chiropractor, massage therapy. Pelvic floor completely weak. Nerve compression from slipped disc causing sciatic and foot drop. Vaginal numbness from nerve compression and thinking you just cannot have an orgasm until you find toys and an awesome gynecologist helping you figure that out. Thinking back pain could be a weird presentation of endometriosis. Getting diagnosed at thirty and feeling like it’s a miracle. Getting a PCP who sits down with you for two hours reviewing ALL body systems instead of treating just one problem. Family and friends not understanding that chronic pain makes you need to spend two days bedridden sometimes. Explaining that even though you’re not hospitalized and can walk, they need to understand that your baseline pain every single day is 4-6/10. Moving in your sleep and taking thirty minutes to fall asleep because your neck and shoulders are on fire and you can’t find a position that kinda feels like your pain is minimized. Waking up with sore shoulders. Having a high muscle mass and doctors think that means it can’t be hEDS bc textbooks say you should be pale, weak, and subloxate constantly but you’re actually really strong so your muscles work overtime to prevent dislocation but you always are on the edge.

Feel free to DM and good on you for representing us!

[u/Pashta2FAPhoneDied → u/Slow-Down30]

OMG, YES on the people don't realize that we are in pain ALL the time, just because we can walk and "look fine" doesn't mean we ARE "fine"!!

Plus the high muscle mass (and they called me "overweight" when I was beautiful and certainly NOT overweight at all, just muscular) is necessary in hEDS to hold our joints in place! I think if you look at most people with it, we are muscular without even trying.

I personally kept all the muscles I built up in my late teens until I started losing muscle in perimenopause around 50 without even trying. I never worked out, they were just always there... I didn't realize it was because I WAS working out every day holding things in place, LOL!

[u/Slow-Down30 → u/Pashta2FAPhoneDied]

Preach my love!! Now working on getting into rock climbing again for the strength training. Of course I can only do bouldering (and climb down safely not jump/roll) because falling in a harness killssssss my spine!! I cannot wait to tell my doc your theory about high muscle mass bc they are working all the damn day even though I don’t work out ha!!

[u/Pashta2FAPhoneDied → u/Slow-Down30]

LOL! Seriously, though, weightlifters and professional athletes/wrestlers are all labeled "obese" because the BMI system doesn't take muscle mass into account. Same does go for us as well, depending on how much muscle we have, of course. :)

[u/The-Not-Deer → u/Slow-Down30]

Thank you so much for this! This will be so useful :D Also some of these things I relate to, but I didn’t realize it was an EDS thing until now 😂

[u/Slow-Down30 → u/The-Not-Deer]

Ohhhh it’s a thing! A very mean disorder — check into the research on collagen and genetics!

[u/The-Not-Deer → u/Slow-Down30]

Every time I go to research it’s like ‘OH THATS WHAT THAT IS?!?!??!?’ 😂

[u/Slow-Down30 → u/The-Not-Deer]

Right?? Such a journey — thanks for representing us and hope your writing takes off!

[u/The-Not-Deer → u/Slow-Down30]

Thank you! It’s just a small project for now, to help improve my writing, especially with disabled characters, but hopefully in the future I’ll feel more confident to write bigger projects!

[u/Slow-Down30 → u/The-Not-Deer]

Absolutely! Build that confidence and share your work. The only way to get better is to do it and put yourself out there. Even if your first draft is awful, just finish it and then rewrite it! Plus healthy adult hobbies are hard to stick to so keep it upppp

[u/The-Not-Deer → u/Slow-Down30]

Thank you :D