#Ehlers Danlos Syndrome

[thebibliosphere]

Hello,

I feel like I may have EDS, but I’m really not sure. Recently I’ve injured myself and can’t move as I did before (especially my hands). What type doctor diagnosed you with EDS? I’m looking up signs of EDS online and a many of the figures hit a little too close to home, but I’ve never been super flexible, like I can’t do the splits or anything like that.

Ooft, ouch. Sorry about the injury :(

So there's a difference between flexible (muscles, tendons) and hypermobile (joint), so it's very possible to have EDS and be hypermobile but not hyper-flexible!

I'm not considered overly flexible (I can't do the splits either!), but a lot of my joints are hypermobile, which is why I was diagnosed with hEDS (hypermobile EDS) and not cEDS (classical EDS).

I was evaluated by a specialist almost by sheer chance. I went to see her about my mast cell issues, and when she shook my hand upon greeting me, she looked down at how my finger joints flexed in her hand, looked back up a my face, and said, "Oh, this is now an ehlers danlos screening."

So that's how I got diagnosed. After years of being told I wasn't flexible enough by rheumatologists, an expert recognized that I was hypermobile instead and diagnosed me correctly based on a series of tests. Since then, I've been able to visit EDS-aware physical therapists who have all confirmed that my body is weird and needs special attention to hypermobility muscle retraining.

It can be really overwhelming trying to find a knowledgeable healthcare provider, so if you haven't already, I'd recommend checking out the Ehlers Danlos Society healthcare professional directory:

This is a curated list of EDS-aware and EDS-specialist doctors from patients around the world. Hopefully, you'll be able to find someone or at least a better idea of where to start.

Good luck with your health journey-- I hope things can improve for you soon.

[chaos-and-ink]

I always feel like my pain isn't valid or it's not enough because I still have a job and I still work and do my classes and such. But then I realize when I read the pain scale descriptions, my baseline is at a 4-5. Flare up's can ramp up to 7-9. The normal amount of pain is 0. That's completely impossible for me to imagine.

[tuliosoap]

Reminder that if you ever ask someone about their disability/mobility aid/etc, there is a right and wrong way to ask, and the person you are asking is allowed to say no to giving you an answer.

[pythonstrid3r]

I want to wake up and feel like I've rested, I want to wake up and not feel sore and exhausted for once, even if it is just once.

All I want is one day where I can feel okay, I just want one day where it doesn't hurt.

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[body-of-ouches]

One thing that MASSIVELY pisses me off is how fainting is shown in media. It’s always the person sways a little, collapses in one movement, and then is unconscious for like… fucking ages??? They wake up hours later tucked under a blanket and it’s acted like that’s normal. It’s NOT. A person that’s fainted should be back with you pretty quickly, actually:

(From NHS website)

I had an experience in my last work place where I fainted, but because it looks so different to how it’s shown in film and TV my managers had no idea what had happened. Here’s a comparison of usual media vs my actual fainting that they were all confused by-

Films, TV shows, plays etc:

1) Person goes “oh goodness” or something similar whilst holding hand to chest

2) eyes roll back, gracefully falls to the floor

3) nearby people see the poor fainted person, pick them up, put them on a bed or sofa

4) person comes to hours or even days later with no idea what happened and everyone else is just like “oh good you’ve woken up 🙂”

My usual fainting experience:

1) Everything starts spinning. Incapable of making words as my sole focus is on trying to get myself to the ground ASAP

2) Stumble to floor/chair/ anything I can lean against

3) Quick violent slump as actual faint occurs. There is no dainty falling- the whole body has hit shut down. Usually smack my head on the floor if I haven’t managed to get myself somewhere soft

4) Aware of surroundings almost immediately, but takes a few seconds to fully come back round

5) Carefully sit back up and explain to everyone going “what the fuck happened” that I fainted, and no, I do not need smelling salts actually.

[talkethtothehandeth]

This is a reminder that you can still serve cunt while using a mobility aid, hope that helps

[stellaltumi]

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

[clownrecess]

Happy disabled pride month to disabled people with undiagnosed physical disabilities

Happy disabled pride month to disabled people with undiagnosed mental disabilities

Happy disabled pride month to mobility aid users

Happy disabled pride month to disabled people who are in constant pain

Happy disabled pride month to AAC users

Happy disabled pride month to disabled people with ableist family

Happy disabled pride month to fat disabled people

Happy disabled pride month to disabled people with scars

Happy disabled pride month to disabled addicts

Happy disabled pride month to disabled people who's disability is progressing

Happy disabled pride month to disabled people who love their disability

Happy disabled pride month to disabled people who hate their disability

Happy disabled pride month to disabled people with underrepresented and/or uncommonly known disabilities

Happy disabled pride month to all disabled people. I love you. /p

[chadepitanga]

there's something so raw and soul crushing about spending your late childhood+teen years suicidal then growing up and actually wanting to live, after an ungodly effort, only to see your health deteriorate because of chronic illness.

[1980s-slasher-film]

Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.

They exist to put us on a level playing ground to everyone else, and nothing more.

[defiantcripple]

Using a mobility aid when you need one is an act of self love <3

[azztiph]

Sometimes u just need to sob and scream and cry and bitch about ur disability

I think a lot of people feel like they need to be at completely at peace with their disability

And you don’t!

Be mad be sad be pissed off!

[mangedog]

shout out to people with spatial awareness issues. wishing you a "didn't bump into any table corners or walls" day today!