Just thinking about the common experience of late diagnosed disabled people of “the normal amount of pain is none” and how we’re just supposed to know that despite *some* level of pain being OUR normal for our entire lives, even if it’s usually not super bad it’s just always there.

Thinking about how, when I told my mother this, she asked me “So what’s hurt?” Which is very different than “what hurts?”

I looked at her, confused. “Nothing is hurt. I just hurt.”

And she says “But where do you hurt?”

“Well, right now it’s my stomach and my ankles-“

She cuts me off. “So you twisted your ankle?”

“No,” I say. “My ankles just hurt. I’ve been walking today.”

Now it’s her turn to look confused. “Just walking doesn’t make your ankles hurt. You must have sprained them or something.”

But I shake my head. “Nope. This just happens on days when I walk more than a little bit. My ankles hurt first, then my knees by lunch time. And if I don’t take a nap and stay on my feet all day, my hips will be hurting too.”

“Oh.”

Joint pain is my normal. Sometimes, if I barely walk all day, the ache in my ankles is barely noticeable and doesn’t affect my functioning because I’m used to it. If I do what most able-bodied people would consider to be a “normal” amount of walking, almost all of my joints will hurt by supper. If I have to wash dishes or run any errands, I’ll hurt so bad I can’t walk for the rest of the day.

Then there’s the chronic migraine attacks. I used to have them multiple times a week as a child, and no matter how I explained myself, nobody ever understood that they weren’t just headaches. I experienced those too, and frequently, but they were not the same. Thankfully, at the age of eleven, I found an article explaining migraine triggers. I was able to identify a few of my own triggers, and the frequency of my migraine attacks reduced to maybe a couple a month. For a few years I was basically on cloud nine, I’d never experienced such a lack of pain before and it was so freeing. Unfortunately, migraine is a progressive condition, so the attacks have gotten more frequent over the years.

And then there’s the “random” pains. Some mornings I wake up and my stomach hurts. Or my chest. Or my back. These are just things I have to live with, because my body’s connective tissue is… well, for lack of a better word, faulty. And I never knew that other people didn’t experience this, because how could I? We never talked about it. Sometimes I’d hear people complain about back aches and just assume they were like mine. Of course, I knew that injuring yourself could cause muscle aches, obviously. But I just assumed that *most* of the time, other peoples bodies hurt like mine did. I didn’t realize that humans aren’t supposed to “just hurt” without a connected incident.

And when I try to explain this to able bodied people, their response is always the same. “Well, everyone’s back hurts sometimes.” “Everybody gets headaches sometimes.” “You’re not special just because you’re too lazy to walk. I still go to work when I don’t feel good.” And no matter how many times I try to say that No, you don’t get it, I *always* hurt, they still brush me off and dismiss me.

Who is hanging on by a thinner thread: me, or my connective tissue?

Cardiac surgeon: "There was more than one hole."

strongly recommend against dislocating additional rib when getting open heart surgery

recommend against having rib re-locate by having unadjusted bipap mask pressed to face and inflating lungs too much

also recommend against discovering new vomit-level meds allergies when coping with open heart surgery and rib trying to re-dislocate

Tristan's Fetch and Tug Buddy: "You went through open heart surgery on hard mode."

There's no place like home.

So my other post has kinda died in terms of traction so here is a new one! Hi my name is Sierra I'm 27, bisexual, mixed race, very physical disabled, mentally ill and I need help to get my teeth removed and to get new teeth! Here is everything super condensed! I have a connective tissue disorder and am unable to work, along with this came chronic nausea, vomitting, and cyclical vomitting which had completely destroyed my teeth. It's incredibly hard to eat and is so embarrassing I do not leave the house without a mask if I leave at all. I'm going to regret this but under the cut you will see any actual photos of what my teeth look like today Any help you can give would be so so appreciated! Including reblogs! They help more than you know!

Here are other places you can donate! c@$happ: $sierrarose111

Ven!mo:sierrarose111

P@yP@|:[email protected]

Thank you so much for reading! If you wanna help your local disabled headed of the big titty committee I would really appreciate it 😊 If you are unable to donate reblogs are appreciated just as much!! I am definitely going to regret this but photo of my teeth is under the cut. Viewer Discretion Advised and all that

Sometimes i accidentally (or on purpose) scare people with how my body can contort, like one time i was showing my dad some of the stretches that i just thought i had been doing wrong because i never felt anything doing them (turns out i wasn't doing them wrong i just have a connective tissue disorder lol) and my dad was freaked out by how far my limbs stretched.

Others times i would freak people out accidentally when just stretching my body out after a while spent without moving much (for example at like the movies), or one time i was just absentmindedly messing with my shoulder joint when hanging out with my friends (don't judge) and they straight up begged me to stop because it freaked them out.

If I find out that my mother’s refusal to let me use crutches is causing (physical) damage to my body I might go beast mode. 👿👿

Love having EDS and being told my shin splints would “just go away” if I ran enough????? That’s not even how shin splints work?!????? Those gym teachers who clearly hated their jobs and assumed everyone was able bodied can fuck off! Disabled people exist, and we don’t just pop up in adulthood!! IF A CHILD IS IN PAIN, DON’T FUCKING IGNORE IT.

Does anyone else with connective tissue problems also have their ribs randomly pop out of place?

It's wild to me how some able-bodied people only think of disabled culture as a concept and they haven't ever actually experienced it. To me the biggest tell that somebody has never experienced disabled culture is their lack of knowledge about something I call Societal Manufactured Disability Theory.

This theory posits that an aspect of disability is manufactured by societal norms, stigmas and labeling.

People with disabilities like myself will tell you that people do treat you differently based solely upon the fact that you are disabled. When my hand writing is too messy to read do to Dysgraphia people assume I'm not trying hard enough to be neat, and if I'm lazy enough to slack with hand writing I must always be lazy. When I tell people I have Dyslexia they think I'm less intelligent, unable to read or incapable of understanding the written word. When I tell people I have a connective tissue disorder which is an invisible disability they think I'm a liar, scheming to take resources away from "real disabled people".

The societal norm here in America is to push forward, laziness is not an option we see it repeatedly in the rhetoric surrounding young people. News sources constantly talking about how "no one wants to work these days" or "young people are taking everything for granted".

There is a huge stigma around having Dyslexia that most people don't notice. In American society where we have a 79% literacy rate it is expected that you can read, so when you can't or you have trouble people think you have a lower IQ. Dyslexia can be genetic so I'm actually a fourth generation Dyslexic from my dad's side with all of them men being the ones to pass it down. My dad has always said that my great grandfather had no support for his Dyslexia, nobody cared and in fact the term Dyslexia was only coined in 1887. When my dad went to school they attempted to alleviate some of the symptoms of Dyslexia by making him watch his hands as he crawled on the floor, believing that the root of the problem was in a lack of eye coordination. To this day I and many other Dyslexics will avoid talking about our diagnosis because of the stigma behind it. I have had many experiences in my life where as soon as people learn that I am Dyslexic they assume that I can't spell anything or that they need to read everything to me. That's what stigma does, it makes people hide away just so they can live in peace and be respected.

It is extremely common for people with invisible disabilities to be labeled as liars, this is mostly due to a lack of education and representation. The general public's idea of disability is limited, but the truth is that disability is one of the most dynamic aspects of human beings. Invisible and dynamic disabilities make up the majority of disabilities; in fact, 1 out of every 3 Americans is in fact disabled. When people see me, a young, healthy-looking man, they never think I'm disabled. If I tell them I am, they may think I am lying. People generally do not like liars, and having such a label attached to your name can be detrimental to your social integration.

You can see that none of those setbacks I mentioned are symptoms of my disabilities. The perceived deviance, stigma, and labeling are not things you'll find on a medical report. However, they do harm me socially and potentially medically when it comes to stigma; these things disable me. Thus, part of my struggle as a disabled person is manufactured by society itself, in the norms we hold and the way we treat others.

I have come to that conclusion repeatedly, as have almost every other disabled person. It's a conclusion that is often reached in the community as a whole. However, it is in able-bodied culture where these stigmas, labels, and perceived attacks originate. So, if someone is completely averse to accepting the Societal Manufactured Disability Theory, it suggests that they have probably never fully been a part of any aspect of disability culture.

figured out wiggly text so updated the eds meme lol

[wiggly text/word art that says "ehlers danlos syndrome? more like loosey goosey ligament predicament amirite? 😎" with some tangled spaghetti noodles that say "this is u". starry pastel ombre background]

hey fuckers who cursed my bones and tissues to be all wobbly

Having Ehlers-Danlos syndrome is fun, because sometimes it gets lonely and decides to create a whole new fun disability to play with

being disabled is really lonely, bc so much of the fun people have is based on physical activity, so while everyone else is having fun, my crippled ass is sitting in the corner by myself. wondering what its like to be able to just do stuff like that and enjoy it, instead of being in pain or becoming exhausted with the smallest bit of activity. i dont want to feel like a ghost anymore. why do ableds get to have all the fun.

im so tired of feeling left out just because i get tired easily and can only walk very short distances without my cane. i dont want to be on the sidelines anymore. &​ i wanna see disabled characters in shows and movies and stuff. having rich fulfilling interesting lives and being part of the plot even though they cant do the same things as everyone else. i want to see people like me being happy. being included and accommodated so they can still have the same adventures as everyone else even with their limitations. i dont want to see disabled people getting left behind and left out of the plot. seeing people like me having happy fulfilling lives, it gives me hope. hope that maybe someday i wont be left behind irl anymore.

Hi, can I ask what hypermobility is? Sorry to be a nuisance if you don't want to answer, but I've never heard of it before!

Hey anon! Of course, you’re no trouble at all.

Hypermobility is very very common. Most people know it as simply being double jointed, being able to do party tricks or having parts of their body bend more than the average person.

It’s completely normal for most people! However, for some people it causes pain, and that’s when it’s not normal.

Hypermobility for me means that my joints move in directions they aren’t supposed to, they shift and get subluxations also known as partial dislocations. This causes extreme widespread pain. I hurt from my head to my toes everyday all day. We are pretty sure I have this because I have a connective tissue disorder. We aren’t currently sure which one, but I am in the process of being tested and I’m working with a geneticist.

For me, my Hypermobility disables me greatly. I am a part time forearm crutch user and I am probably going to get a wheelchair for Christmas (yay me!).

I hope this answers your question and if you have anymore questions then let me know! Have a lovely day!

i have a question for mobility aid

[pt: i have a question for mobility aid users]

what aid(s) do you use and why? like how do they specifically help you? I'm trying to figure out what mobility aid would be best for me for if i get one

thanks!