#hypermobile eds

[potsiepumpkin]

When the chronic fatigue is chronic

[chronic-counter-user000]

dear parents, if your child has "seemed fine this entire time" but is now seeking out diagnoses, mobility aids, medical help, more doctors, and is sharing their pain more. do not fucking shut them down? even if it ends up being nothing, showing them that support through all of that will seriously help them. if it ends up being something and you're a bitch to them, the joke will be on you and that strain on your relationship will never go away because. you didn't listen.

listen to kids. we tell you what we need, it's not that hard.

[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

[crippledpunks]

shoutout to every person who deals with incontinence. i dealt with bedwetting up until my early teens, and now deal with stress and urge incontinence and for years never wanted to talk about it because of the shame and stigma other people place on not being able to control your bladder or bowel movements.

incontinence is a disability. it's not gross or wrong to talk about incontinence. incontinent people are not dirty or disgusting. if we could control these parts of our body, we would. we're not an inconvenience for being this way, and we don't have to be treated like a burden or like we need to be "fixed".

whether or not you use incontinent products like briefs, pads, diapers, plastic bed sheets, or whatever else, you are loved, important, and deserved to be seen when there are conversations about disability awareness and acceptance. we don't deserve to hide in shame when all we need is to be accommodated and accepted.

[aestheticofalifetime]

Me when my disability disables me

[panicismydefaultstate]

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.

[the-archenlandian-court]

Things I wish I knew before I got diagnosed with a chronic illness

You’ll forget - Sometimes you’ll straight up forget you have a condition, that you have a disability, and that others don’t feel like you

Your most important job is to stay alive - Everything else is secondary, as long as you stay alive you have achieved something

It’s okay to cry - It’s normal, chronic illness is sucky, but don’t cry for too long or focus too hard on everything that’s wrong because it will make things worse

Your body is in a war, be kind - Your body is constantly fighting against itself, give it time to rest and heal, eat food and drink, do what you can to aid in the battle

If you feel like you can’t do it, you can - Have a cry, eat some ice cream and have a nap, when you wake up you’ll find the strength to keep going

Some advice from younger me; January of 2021 (I just found it stashed away)

[walkingsnakes]

HER FR !!!

roxie richter chubby and hypermobile propoganda

text- waiting for pain to go away before going on a date

comic text- her weakness is her kness

...she has knee armor!

[TEXT ID: Two drawings of Roxie Richter from Scott Pilgrim along with a small comic near the bottom. In the top left corner Roxie is in a pink bra and underwear sitting across legged with the caption 'Waiting for pain to go away before going on a date' looking annoyed. Along the right side she is standing in a black hooded shirt and shorts with a yellow cane.

The comic below starts with Ramona Flowers telling a confused Scott Pilgrim 'Her weakness is her knees' before shifting to a close up of Roxie's knees. The next panel is Scott turned looking at Ramona frightened telling her 'She has knee armor' to which Ramona looks disappointed]

[hugs4neth]

We need to talk about how much physical disability affects your ability to function in a desk job/school. Especially pain. Like have you ever tried to write a proposal or essay while in pain? Or even just an itch?

It consumes your mind until you can’t focus on anything.

And yet we expect people with chronic pain to function at the same mental level as abled people. Like yeah I’m smart enough for this.

But have you ever tried to participate in a meeting with spikes on your chair? You know that sitting down is causing the pain, but if you stand up then it’s unprofessional and no one will take anything you say seriously. Every thought, every action has to complete with the constant chanting of pain.

Pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain, pain.

It never goes away, it never stops. It changes, sure. It wriggles around and it shifts and it ebbs and flows. But it doesn’t stop.

If I want to be productive, I have to take pain meds. But I can’t take them all the time because I’ll give myself stomach ulcers. The side effects for NSAIDs include dizziness, drowsiness, headaches, and long term use can cause permanent liver damage and affect your circulatory system.

Overdoses cause seizures, trouble breathing, and loss of consciousness.

But taking 2 tablets every 4 hours won’t last all day because you can’t take more than 6 tablets a day, and you should really only take four.

And the alternatives are pretty much all addictive. Doctors won’t prescribe them, and

Do you get it yet? There are no good options. There’s no escape. Pain is simply the constant.

Maybe you think the consistency would make it less noticeable, that you can acclimate to it. But pain is pain. Sure, I have a higher pain tolerance than most people. But that doesn’t make it go away. My 10 is higher than most people’s 10, but the 5 still hurts like hell. 1 out of 10 pain is still pain.

So please, let’s talk about this. Let’s talk about how physical disability affects non-physical activities too.

Edit: 7 days later I'm still trying to write the essay that triggered this post. 7 days later I'm in tears over this fucking essay because every single word I write causes me indescribable amounts of pain but I can't get an extension because no one ever talks about this, and I'm too young to have a disability, and I was able to do this a few weeks ago, and if I can't do this I'll never be able to do anything ever again because if I can't sit in bed and write an essay then I can't do anything because this was the last thing I had left, and if I can't do it now but I can do it in the future then I'll have been lying, and literally just typing this edit is making my pain worse but I have to be heard because otherwise I don't know what I'll do.

[melodymorningdew]

I cannot fight for my health and fight the world at the same f**king time.

[mascspomax]

you know what? I deserve to be angry.

[98lindsey]

I was out with my family for my birthday at a restaurant when I started having an allergic reaction. So I pulled out my IV stuff to give myself something to stop it and my dad asks:

“Do you want to go in the bathroom and do that”

I laughed a little “um, not really”

I understand it’s a little strange for me to pull out needles and meds and everything in public, but the restaurant bathroom is the last place I want to be when setting up something to inject into my blood stream 😬

Can we normalize people having to regulate their bodies with medication in public please?

[chronic-counter-user000]

you're allowed, love. you're allowed to hate that you can't do things. you're allowed to despise your own family for denying you anything. you're allowed to be spiteful and you're allowed to be irritable.

you didn't choose this.

and you're allowed to yell.

scream, love.

fucking scream.

I DESERVED MOBILITY AIDS.

I DESERVED HELP.

I DESERVED A BETTER COMMUNITY.

because you did, you did deserve those things.

you're ill.

[bold-tachycardic-baby]

Why can’t people understand my anger at medical professionals? I logically know it’s because they’re able bodied and have likely never had a bad experience. But why can’t they use a bit of compassion to see the problems with healthcare? Let me be angry at being treated poorly. Let me be angry about the state of our healthcare system. Let me be angry.

[crippledpunks]

cane users don't have to use their cane for every single step in order to be valid in their need for a cane. cane users can suddenly stop using their cane while moving around and not invalidate their need for it next time they use it. some cane users may only use their canes during flare ups. some only need their cane every few steps for short bursts. everyone's needs are different.

every cane user deserves respect.

[spookietrex]

I am valid even when my small victory is that I took my meds that day.