#Ehlers Danlos Syndrome

[d3r4ng3d-d0ll]

Seriously I'm always exhausted yet push myself because I feel guilty of being lazy or not doing enough.

see the THING IS I don't feel like I ever worked hard enough to have "earned" the burnout, which is. probably how we got here.

[demiboydemon]

[chronicsymptomsyndrome]

Sometimes invisible disability has me wanting a big tattoo across my forehead that says FUCKING DISABLED ACTUALLY or MY BODY/BRAIN DOES NOT WORK THE WAY YOURS DOES or JUST BECAUSE YOU CAN DOESN’T MEAN I CAN TOO or fucking something god I’m so tired of people assuming everyone can do everything! fuck!!!

[chaotic-evil-gender]

EMERGENCY UPDATE

I have had to greatly increase my goal. I'm sorry to ask for so much, but there's no way around it. doctor's have told me this clinic is my only shot at getting proper care, and more and more surgeries are scheduled by the day. please share

as always, you can donate to me on cashapp, venmo, and paypal: all under erisphant

please contact @lemonsinasoup about charity commissions if you wish to receive art in exchange for your donation

thank you 🩷

[d3r4ng3d-d0ll]

Real I told myself I was faking how bad my pain is and know I'm in the er. So uh note to any other chronically ills or disableds LISTEN TO YOUR BODY ITS TELLING YOU SOMETHING

*showing visible symptoms* oh my god i need help desperately

*symptoms go away for one day* what if im just faking it

[thebibliosphere]

In the never-ending quest to alleviate my migraines, I bought a special angled pillow that lets you sleep on your side while your arm just kind of hangs through a whole in the middle. I did this because I’m a left-sided sleeper, always have been.

Until my neck subluxated and now I can’t sleep on that side without compressing some vital nerves and blood arteries. I also can’t sleep on my back right now because the pressure compresses my occipital nerve. Basically sleeping has been a nightmare recently, but that’s not the point of this post.

The point was I brought this up in physical therapy to talk about how great this pillow is because I can now sleep on my right side without the stupid thing going numb or waking me up because it hurts. And my PT was like wow, great! How did you sleep on your left side for so long without it being an issue?

And I said, oh that’s easy. I just tuck that shoulder out of the way.

And she said, ...what?

And I said, yeah, I just tuck it out the way. Not like my right shoulder. That one doesn’t move as well. It just hurts, I think there’s something wrong with it.

And my physical therapist asked me to demonstrate what I mean when I say I ‘tuck my shoulder out of the way,’ and haha, you’re never going to believe this, turns out I’ve just been casually pulling my left shoulder out of the socket for, oh, let’s see, 30 years? And then napping on it like hmmnm yess comfy.

Anyway. I looked up from my demonstration and my physical therapist was making this face:

[talkethtothehandeth]

Wild concept that shouldn’t be wild and the coldest take ever: disabled adults are *adults* and not just children trapped in adult bodies

Disabled adults have sex

Disabled adults do drugs

Disabled adults curse

Disabled adults get piercings and tattoos

Disabled adults can make adult decisions and act and behave like adults because we are adults

It’s just so weird for people to constantly infantilize me all because of my mobility aids when I’m not a child!!!

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[teacupbug]

My controversial opinion is that I think chronically ill people should be able to fight one doctor a year

[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!

[janeacular]

can they invent a mobility aid that helps with the joint pain & also does NOT cause different joint pain in a different area from use

[chronically-mars]

I never truly knew the meaning of friendship until I became chronically ill and disabled. When my health declined I had people leaving left and right because I couldn’t keep up with other teenagers. I stopped having people check on me, I stopped getting invited to stuff, stopped being included, until I just got left behind. Now as an adult I found friends who check up on me, make sure whatever we do is accessible to me, always making me feel included, they are my support system.

Check up on your chronically ill and disabled friends, keep including them in stuff even if they have to end up canceling it. Being excluded for something you have no control over is horrible and no one should go through that.

[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?

[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.

[thebibliosphere]

Does anyone know of any good resources for diagnosing EDS in people of color?

I know I’m normally the resources person but I’m struggling to find anything that isn’t other people also looking for resources.

Do any of the medical people following me have an insight?

For context I have a friend with symptoms identical to mine but they’re “failing” the skin test section and I suspect the doctor involved is basing it purely on the “pale skin and visible veins” criteria and completely neglecting to look at skin texture and scarring.

I’m not hopeful there’s a secret not racist manual out there, but I’m asking anyway just in case…