Hypermobile Ehlers Danlos - Blog Posts

No way I was ever a competitive gymnast

Anyone else sometimes forget the level of disabled they are because it's so normal to yourself?

Sometimes i'll remember something i used to do, something i was able to do and that i definitely wasn't thinking about and i'll have trouble believing it. I know i was walking up and down stairs multiple times a day everyday and oftentimes running them but. It just doesn't true. Like, what do you mean i used to walk a kilometre to school and back every day when i was only half my size?? That can't possibly be right? But somehow it is! I used to jump on those garden trampolines for hours on end. How???

How'd I dislocate my hip by sleeping 😭

Anybody else with ehlers danlos syndrome have sway back?

Idk how to fix it, but I was wondering if anyone else does this

Any other chronically I'll people have the experience as a kid where they just Didn't Feel Good? That kind where you couldn't describe your symptoms, or pinpoint anything specifically wrong with you, other than just feeling bad. That definitely should've been more of a red flag.

The sarcasm here is fucking hilarious 💀 whenever I inevitably end up using mobility aids, imma just tell them my doctor told me to, bcs she did. Even if your doctor denies you a mobility aid, people get uncomfortable if you just say a doctor made you, so you could always just make stuff up.

You shouldn't get a wheelchair, walker, cane, shower chair, or any kind of assistive technology mobility aid because then you might become dependent on them. Just like how you also shouldn't get glasses if you have bad eyesight because then you might become dependent on those.

For instance, if you end up stuck using corrective eyewear, you could actually lose your ability to tell what things are even when they are extremely blurry! You need to get used to having migraines from seeing unclearly because if you wear glasses all the time, you are basically giving up!! You don't need to see things coming at you from far away! You just need to get good at dodging, and if you can't, then you have no one to blame but yourself!!

For example, I read a really heart-worming article recently about a girl who was stuck using glasses - just absolutely, tragically trapped in her eyewear from dawn to dusk, even though she was good and never ever complained; and I heard she trained herself to discern the blurry faces of her loved ones with 60% accuracy! - she was even able to walk down the aisle at her wedding WITHOUT forcing the discomfort of seeing a woman in glasses on all her guests!!

Sure, she had to give her vows with a splitting headache, and she couldn't see her husband's expression when he said "I do," but overall, SO inspi-ration-al!!! So up-lifting!!

(She didn't even have to use a seeing eye cane, which would have been the worst-case scenario, obviously, because she worked hard to make sure she looked LESS disabled, not MORE disabled!!! Everyone knows blind people exist solely to be a cautionary tale to sighted people!!)

Also, did you know some people get glasses when they only need them a little bit?? How selfish of them! Sure, there's not a shortage, and an increase in demand would result in overall increased accessibility to glasses--but emotionally it's like taking glasses away from someone who needs them more! After all, if everyone who needed glasses got them, then...... um...... more people would have glasses! Which is probably bad!!!!

I also had a friend who was trapped in glasses who saved up all her money for laser eye surgery, and I don't know why everyone doesn't just do that! Sure, some doctors say some people don't "qualify" and it "won't help" those people, but that's why you can't give up!! You don't want to be one of those people!

After all, what's the worse thing that could happen with an unnecessary laser surgery to the face that comes with crippling debt??? It's worth the risk to gain your FREEDOM back, and I'm so proud of my friend!!

Tragically, she did die later that year while driving Uber and squinting at street signs, but at least now I know my friend is finally free from the shackles of her terrible eyesight. #ripAshley #rippedAshley #justripit 😌😌😌❤😇😇😇

And that's why you shouldn't get used to using a mobility aid!! Because, like glasses, they are inherently embarrassing to be seen with; and - like glasses - it is more noble to silently suffer than to depend on unnatural technologies that force you to rely on them!!! (Besides, everyone else will be SO much more comfortable if you look normal!)

I hope you learned something today. 💖

Being a disabled person going into the medical field so so weird. Other disabled people are saying "fuck medical practitioners" and I'm like "...sorry? Idk what I did, but srry ig"

Question for others with hEDS, specifically those who use a wheelchair:

How does it not hurt your shoulders? I have hEDS, but don't use one, and just about anything hurts my shoulders. I was wondering how moving your chair around wouldn't hurt. Thanks!

i'll forget i have EDS and then I'll manage to somehow sprain my ankle sitting down in bed??

Its Ehlers Danlos Syndrome awarness month and I would like to be LESS aware, please and thank you.

“You’re too young to be so tired”

Madame my brain is melting out my eyes from exhaustion, will you shut up

“You’re too young to be in pain”

I will end you.

So I have a question for others with diagnosed hypermobile ehlers danlos syndrome

When I was diagnosed, the doctor said to me that there are no pain meds that can help with my pain that he is willing to give me because the only ones strong enough to work are highly addictive or can make you “high as a kite” in his words.

Has anyone else been told this? I mean it’s true low level pain meds don’t work on my joint pain but still, is there anything?

I Will head canon Frankie Stein with Ehlers Danlos Hypermobility and no one will stop me.

HAHAHHAHAHAHAHA

*falls asleep in stats class hunched over my desk, with four missing assignments due to doctors appointments, falling asleep and missing notes*

Saw a sign at my high school saying: “ Don’t quit when you’re tired, quit when you’re finished.” Hahahahahaha, not all of us have that luxury

oh god, absolutely constantly. it's always have you tried yoga, and i have to say "well, justvlike the first sixty times you asked, yes i have, and no, it didn't cure me. that's not how it works." im a lazy ingrate for having to take bed days, and im giving in to my weakness for using a cane. it's the most insulting, invalidating, hurtful bullshit ever. and when it comes from family it's so much more painful because they should be able to see how much you struggle to do the things they constantly recommend

is anyone else with chronic and mental illness constantly lectured by everyone in their life about what they need to be doing to "improve" their life?

I'm just so tired of it. Every doctor, every family member, even my in laws now I'm just constantly told what I need to do better and reminded how I'm not good enough/not doing enough

im not a doctor, im just also a mess of shitty cartilage, and this is my experience, so like, dont quote me or anything lol

neoprene knee braces and ankle brace work pretty well, but i can never sleep in them, its just very uncomfortable, it gets really sweaty and kind sore. ive not yet tried elbow/shoulder/wrist braces, but i imagine its a similar experience. they do limit joint movement to an extent, but that means it can also be hard to go about your business. i think id recommend full on braces for liek, exercising, and particularly wobbly days. on better days, flex tape works pretty well

hope this helps!

dumb question but do those joint braces keep your joints in place and could i use them for subluxations

in the bed

straight up enduring it

and by 'it' haha well

lets justr say. My Connective Tissue Disorder

It’s May, which means it’s Ehlers Danlos Syndrome Awareness Month!

Since it’s massively underdiagnosed, I figured this would be a great occasion to share some of my favorite infographics about this condition. (And for any of you who have been wondering why my personal posts here are basically all about medical mishaps and weird injuries: it’s because of hEDS and comorbidities.)

To any of my fellow zebras out there, we will make it through this!