Forums » Smalltalk » AMA: hEDS, chronic illness, and art.

First AMA, mostly because I have the time now!

Hi, my name is Deer, and I have hypermobile Ehlers-Danlos Syndrome, as well as Fibromyalgia, and a loss of feeling in my hands and feet; There's more to my physical condition, but it starts to get specific and personal after that, so we'll leave it there. I'm a cane user, and have been told that a wheelchair is looking like a big requirement in my near future.

hEDS effects my joints and skin, causing frequent dislocations of any joint on my body - Yes, this includes my fingers, toes, jaw, even my ribs! They dislocate 'randomly', with pressure, quick movement, or sometimes even while I'm asleep. Chronic pain and fatigue are big factors of my life, though my skin isn't as 'stretchy' as some others with hEDS!

Fibromyalgia is a chronic disorder causing pain, tenderness, and weakness through the body - for me, it affects my day to day and my sleep, as I'm often experiencing at least a '3' on the main scale when, of course, the normal is to feel a '0'. I also experience intermittent numbness in my hands in feet, and my doctors can't seem to decide if it's neuropathy or not since my nerve study.

Despite numb hands, fingers that like to not be where they should, and being accurately described as 'dead tired' almost every second of every day, I still consider my life to be my art - I don't feel alive, or happy, or like I can really feel my feelings unless it's through my art. As you can imagine, there's a lot of trouble with a skill that involves such fine motor movement when most movements, gross or fine, can mean a week of swelling, braces, and general pain.

But, also, like I said: Art is my life.

I figured this could be a general thread for disorder/symptom questions, or art-related questions - Or both!
Bonus: A quick character reference I drew this morning.

Lovely drawing!

Do yu have to do physical therapy for these conditions? Or is there anything that helps mitigate the issues?

Hi! Thank you :^)

I was in physical therapy for a time when I was 12 and had my first major dislocation (torn ligaments), and I've tried since then but find that I usually just hurt more than anything and don't see much improvement. Instead, I tend to use KT tape to help stabilize my major joints (knees, elbows, shoulders), and have a combo of medications for pain management!

Stretching and frequent breaks are also a major must-have! Learning to actually pace myself and not stayed hunched over like a shrimp with my bones cramped up is one of the biggest things I think everyone should do - but especially if you have something funny with your bones like me.

I think that is EXCELLENT advice.

About what age did you get your diagnoses?

I should have been diagnosed at 12, with that dislocation, but I had doctors who preferred the 'think horses, not zebras' way of diagnoses. So, it was at 19, when I started developing numbness in my hands and feet that I was sent to a doctor who went, 'well, those other things aren't normal either' and did the tests needed!

It's only been three years with an official diagnosis, but the amount of things that made sense the second I read about hEDS... Mercy.

Kudos to you. What are your favorite things or people/characters to draw?

Fellow hEDS zebra here!


How helpful is the KT tape? I've been considering it, but wasn't sure just how well it actually works.

Late as anything because I actually started to draw an animatic and forgot omg.
Taht's sort of the answer, though! My favorite character to draw is my OC, Alice!

HIGHFIVE (or not because my wrist will pop and it'll be awkward for everyone /j)
KT tape is really useful for me! It helps me with my 'big joints' (shoulders, knees, elbows) and if I need to do anything that involves a lot of movement with those joints, I make sure to put tape on first. I won't say it's a cure-all, because that's just not possible with a disability like this, but it is very helpful, like any mobility aid!