#hypermobility spectrum disorder

[permanently-sprained-ankle]

Disabled POC face a unique combination of racism+ableism in reaction to their disability.

I’m more likely to get the cops called on me for bringing my service dog into a shop than a white person with a service dog.

I’m often labeled aggressive and violent when advocating for myself, while white people are more likely to be dismissed as a frustration or a nuisance.

Disabled people of color are more likely to be viewed as a threat whereas white disabled people are more likely to be viewed as weak and pitiful.

While all disabled people, regardless of race, are going to face medical neglect/mistreatment, disabled POC will face additional neglect due to racial bias in healthcare.

In fact, POC are more likely to *become* disabled due to medical negligence than a white person.

My experiences with ableism are largely impacted by race in a way that white disabled people don’t face when experiencing ableism.

[Image ID: White text in a Galaxy background reads If you: Derail my posts; are an “aspie”; run a sh/ed blog; are under 16; are a TERF; think cripplepunk is for mental disabilities; think that autism isn’t a disorder; are pro-transabled, trace, transage, etc; are pro-map or pro-zoo; are a transmed; want to completely demedicalize autism, I will probably block or mock you. End ID]

[dissociacrip]

it might seem weird at first but it's true that having symptomatic joint hypermobility (meaning the "bad" kind of hypermobility that results in chronic pain, a proneness to dislocation/sublixation, etc. such as in EDS, hypermobility spectrum disorders, and other CTDs) doesn't necessarily mean being very flexible and sometimes this can potentially present a problem when it comes to accurate assessment and diagnosis. part of this is because flexibility doesn't just involve joints; it also involves muscles and other soft tissues.

i have generalized symptomatic hypermobility (either gHSD or hEDS, who knows because it's not like i'm getting properly diagnosed anytime soon) and i'm an 8/9 on the beighton scale. i've been incapable of touching my toes since elementary school because my hamstring muscles have shortened over time due to the strain from compensating for hyperextended joints and hypotonia. i can't meet the 9th beighton criteria where i place my palms flat on the floor without bending my knees, but that doesn't mean i don't have a hypermobile spine, because its my shortened hamstring muscles that are preventing the movement, not the joints. i was just doing stretches at the gym earlier today for cooldowns that looked absurdly easy for the able-bodied person in the video i was following but i couldn't bend my legs to the full extent that they did due to other shortened muscles in my legs, which is also a consequence of hyperextended joints and hypotonia.*** i think it's easy to guess why something like that might end up masking the full extent of joint hypermobility in some people.

(***for people who don't know what hypotonia is, it's when there's inadequate tension in the muscles in the resting state or in response to a passive stretch, such as posture. in other words, muscles are too loose, which can cause a myriad of really sucky problems! it's the result of CNS dysfunction and/or structural problems in the muscles - conditions like EDS and other CTDs sometimes involve hypotonia due how they can affect viscoelastic properties of muscles. while being characterised by "floppiness," hypotonia can still result in stiffness and shortening of the adductors, quadriceps, sub-occipital muscles, etc.)

in more extreme cases, this kind strain can lead to muscle contracture, which is when a muscle is permanently shortened and hardened. joints themselves can also become contractured, and as a matter of fact, contractures appear to be part of how some forms of EDS are identified, such as myopathic and musculocontractural EDS (it's even in the name of the last one.) this is a quote from someone with mcEDS from elhers-danlos.com ("Musculocontractural EDS: My puzzle pieces put together") though i know the EDS society doesn't have the best rep:

When I was born 8 weeks premature by emergency caesarean, the doctors and Mum and Dad were stunned. Apart from requiring life-saving treatment, I was floppy, and also had major obvious deformities of my limbs and dislocated hips. I had contractures in my hands, fingers, shoulders, hips, ankles and feet. I have very little muscle in my neck, arms and legs. I spent 10 weeks in NICU and was diagnosed with Arthrogryposis at birth.

(...)

The contractures affect me in different ways. My hands are always clenched, and they do not open out properly. I’m unable to tie my hair up myself unless I am lying on my back, which allows gravity to pull my arms back. I can’t put my hair behind my ears with my right hand unless I’m using my left hand to push it backwards. Although I am right handed, the fingers on my right hand don’t open more than 2 inches and I’m unable to pick anything up with that hand. My left hand is far more deformed, but I can grab things with that hand and use it to stabilise my right. I carry things on my right side in between my arm and torso in the crook of my elbow and I look like an axe murderer when holding a knife.

so yeah, ironically enough, sometimes being symptomatically hypermobile involves a limited range of motion rather than being especially flexible. that's your fun fact of the day!

[wheelie-sick]

Basic dislocation/subluxation first aid

Keep in mind I am not a doctor, this is information I've gathered from medical sources and personal experience. I've done my best to link sources.

Some vocabulary first:

Dislocation - A bone is out of place to the extent that the bones are no longer touching

Subluxation - A bone is partially out of place but still touching the other bone

Dangers

When dealing with frequent dislocations and subluxations it's important to note that dislocating some joints is more dangerous than dislocating other joints. While all dislocations are medical emergencies some people choose not to go to the hospital for all dislocations and subluxations they experience however there are some that absolutely require emergency attention. In particular:

Vertebrae - Dislocating or subluxating a vertebra will cause a spinal cord injury. It's important that you seek emergency care to evaluate the extent of the damage and prevent further damage as severing your spinal cord completely can be fatal.

Collarbone - If your collarbone dislocates inwards it's important to seek emergency care to prevent further damage. A dislocated collarbone can cause life threatening problems with breathing and blood flow.

Knee - If your knee (not kneecap) dislocates it's important to seek emergency care as up to 40% of knee dislocations cause vascular injury that can threaten the entire limb if untreated

And while not all dislocations and subluxations are life or limb threatening all will damage your soft tissues in the surrounding area. A joint popping out of place is bludgeoning in all the surrounding structures in the process. That's why it's important to take care of your dislocations and subluxations correctly.

Improperly healing a dislocation or subluxation also poses its own risks. When dislocations and subluxations first happen the tissues holding the joint in are damaged making it easier to dislocate/subluxate a joint again. Not allowing these tissues to heal poses risk of additional dislocations and subluxations and can create a vicious cycle of tissue damage.

Reduction (Relocation)

Jaw

Vertebra - Go to the ER

Collarbone - Requires medical assistance

Shoulder

Elbow

Finger

Hip

Knee

Kneecap

Ankle

Toe

There were no available guides on reduction for wrists and ribs

What to do following a dislocation/subluxation

Reduce the joint

Apply a brace or splint to the joint. This brace will need to stay on for several weeks-months to allow the soft tissues to heal. This brace is more than a day-long commitment. Bracing is important because it stabilizes the joint while soft tissues heal and prevents further dislocations/subluxations.

Take weight off of the joint/avoid using the joint for 1-2 weeks. When people have been dealing with chronic pain it's easy to try to continue using a recently dislocated/subluxated joint. That joint needs time to heal and that healing will only happen with rest.

-> "I dislocate/subluxate joints so frequently that I cannot possibly do this"

I would make sure that what you're experiencing are actually dislocations/subluxations. A lot of people with disorders that cause subluxations/dislocations mistake ligaments and tendons popping for subluxations and mistake subluxations for dislocations. This causes people to think they are subluxating/dislocating many more joints than they actually are.

If you are truly experiencing that many dislocations/subluxations I would strongly recommend speaking to an orthopedist to discuss bracing and/or surgery for your joints.

If you aren't able to see an orthopedist it's still worth trying the above steps to the best of your ability.

[mothwiingz]

ok ik this shits degenerative but what if im exaggerating. surely its not possible for me to go from “a 30 minute hike, without my cane, will cause me to have annoying brainfog that makes it so i cant enjoy things for like half an hour after” to “a 30 minute hike, with my cane, will drain me completely, leave me unable to stand afterwards, and cause me to have to sleep for 5 hours afterwards” in THREE MONTHS. im prob making it up. im making it up arent i

[the-fabled-disabled]

hey chronic illness besties. I thought I may have POTS because for a long time I would get really light headed, have my vision black out, and sometimes just straight up faint when I stood up, but I haven’t been doing that nearly as much. I only get dizzy occasionally and I haven’t blacked out in a long times Could there be a reason for this or was it just a weird thing I experienced?

[wormonastringtheory]

I was so active today and now I may pay the price (joint ouchie)

[maxpawb]

going to try to convince my mom and doctor this month that I need a wheelchair o7

it turns out that being afraid of going out to have fun, to the airport, to places that don't have anywhere to sit down, etc. from fear of how much pain it will cause during and afterwards, is perhaps Not how it should be

[rjalker]

[ID: a five panel comic in mostly black and white, showing a werewolf on the right side, and text on the left.

In the first panel, the werewolf is grinning with a mouth full of teeth and saying, "Here are some of my personal experiences with being disabled for anyone who wants to be able to write a disabled character accurately :)", with a smiley face emoticon at the end.

In the second panel, the werewolf is smiling with its eyes closed, while tags in dark grey appear in the empty space across from it: "disability" "reference" "writing advice" "writing disability" "dislocated rib" "save for later" "hypermobility" "dislocations"

In the third panel, a new tag reading "whump reference" has been added in big black letters, covering some of the smaller ones. The werewolf's face has gone blank in shock.

In the fourth panel, The werewolf is snarling, and the tag "whump reference" has grown larger and erased all the tags before it.

In the fifth panel, the background is light red, and the werewolf is motion blurred as its mouth is open to scream with its eye glowing red,screaming in all caps black text:

"If your first thought upon seeing disabled people talk about their personal experiences is "Ooh I should write torture porn about this" you are a shit fucking ableist person who needs to stay the fuck away from disabled people forever!"

End ID.]

If you tag any of my fucking posts about disability as "whump reference" or "whump prompts" you are so ableist and horrible it's not even fucking funny. Stay the fuck away from disabled people, and especially stay away from my posts where I am sharing my personal fucking experiences with being disabled.

At what point will "whump" writers stop being ableist fucking shitbags? Never, apparently!

Edit for people are fortunate enough to not know this yet:

"Whump" is what people who write stories where they do nothing but torture a character for gratuitous violence call it. It goes far beyond normal levels of "this is an angsty story", it's literally just people torturing characters and getting off on doing so.

So the person who left that tag meant that they were going to be using my personal experiences of being physically disabled to write a story where someone with my exact disability using my personal examples was going to be tortured through that disability, probably graphically.

"Whump" writers are constantly being ableist and putting their horrific shit in tags for disabled people and doing crap like this.

They literally look at me, a real disabled person, and think my experiences, which I was sharing for people who wanted to write about disabled characters /respectfully/ is inspiration for a story where they're going to litterally torture and humiliate someone exactly like me, with my disability, using my own words to help describe it.

It's ableist, it's fetishizing, it's absolutely revolting and evil.

[yukiwhitetm]

I'm not surprised that my leg is on fire from chronic pain but that doesn't mean I'm happy about it.

[just-a-queer-fanboy]

Chronic fatigue is so annoying like.. yes I have tried exercising. Yes I have tried sleeping more. Yes I have tried yoga. And meditation. The thing is that shit doesn't even always work for abled people, let alone people with multiple conditions that cause chronic fatigue with no fix and no discernible cause.

And I have to keep explaining that yes, even though I'm doing everything I can, my body still decides that we haven't slept in 3 days. Kill me /j

[xmcu-fietro]

people with chronic fatigue—how do you manage the fatigue when you have a lot of things to do?

my doctor thinks I may have fibromyalgia but she’s been overall pretty unhelpful/dismissive, and I need a few tips for figuring out how to conserve/boost energy as I finish the semester and prepare for a busy summer. Caffeine doesn't help me because of my ADHD, and sleep rarely helps.

Specifically, is there anything that helps energy while standing up? I don’t have any issues with walking, but when my fatigue/muscle and joint pain/muscle tension flares a lot it makes standing up pretty exhausting, so outside of making myself go to classes when I can I pretty much stay in bed or on the couch as much as possible, but that’s not good for my grades or my mental health.

Any help is appreciated!

[permanently-sprained-ankle]

Dear (physically) abled people: the accessible bathroom stall is NOT for you.

And no, I don’t care if you’re neurodivergent.

Acceptable reasons to use the accessible bathroom stall:

You have mobility issues (visible or invisible) and need the support of handles/grab bars

You have disability aids, such as a cane or a service dog, that require extra space

You need space to catheterize, change a stoma bag, or perform another disability-related procedure

Your disability involves incontinence or inability to hold waste and therefore you need fast access

Unacceptable reasons to use the accessible bathroom stall:

You want privacy during a panic attack and therefore think that it’s ok to use up resources that aren’t for you (idc if you’re neurodivergent)

You want privacy during a meltdown and therefore think that it’s ok to use up resources that aren’t for you (idc if you’re neurodivergent)

You want to eat your lunch in the bathroom (idc if you’re self conscious about eating)

You don’t have actual digestive/gastrointestinal disabilities, but you just want to take a nice long shit

You want to take a break from socializing (idc if you’re autistic)

You want to have sex/make a phone call/get drunk/etc

Let me emphasize: your panic attack, eating habits, social anxiety, or whatever, is not a justification for using up a limited resource that isn’t for you.

I do not care if you’re neurodivergent or mentally ill or whatever. You’re occupying a space that isn’t meant for you. You’re appropriating a finite resource that some people have no choice to need.

Physically disabled people, such as myself, are not just annoyed, but materially harmed by neurodivergent people who think they have the right to occupy the accessible stall for their panic attacks or what have you. We can get UTIs, other infections, rashes, and pain from not having access to a useable bathroom… waiting 20 minutes for you to eat your fucking salad in the accessible stall while we are in wet underwear/diapers is not ok.

Don’t use the accessible toilet if it’s not for you. End of story.

Edit because y’all are putting words into my mouth: this isn’t about invisibly disabled people. This isn’t about me standing outside every accessible toilet trying to judge whether or not each individual is disabled enough. This is about a broader trend of abled neurodivergent people speaking over physically disabled people.

[dissociacrip]

shoutout to other physically disabled people (esp. if you're also mentally disabled/ill) who are seen as not wanting to "help ourselves" because we can't make "simple" lifestyle changes,

who can't keep up with PT/OT on their own even if the exercises "just take 10 minutes" or generally can't keep up with regular exercise,

who aren't able to cut trigger foods out of our diets even if what they trigger is actively damaging our bodies/progressing certain things,

who use assistive devices, treatments, or aids that aren't technically "good for us" but they're all we have and we just want something, anything, to make our lives less miserable and aren't able to do much else

anything else where "just making this one change" would technically be beneficial but it's difficult to keep up with, or takes too much energy/takes executive function skills that we don't have, or conflicts w/ stuff in our lives that's not seen by others as important enough or significant (like sensory issues)

we're not "lazy" and we don't "just need to try harder," we're just not capable of "just doing" many of the same "simple" things that other people are, because we're disabled

[wheelie-sick]

thought I'd share a quick guide to hyperextensions, subluxations, and dislocations just because so many people use the words incorrectly

hyperextension = a joint moves beyond the standard range of motion

subluxation = a joint partially moves out of place. this rarely corrects itself. a subluxation may cause damage to the surrounding tissues. this is not the same as a joint making a popping sound

dislocation = a joint completely moves out of place. this will not correct itself and requires medical intervention. a dislocation will almost certainly damage the surrounding tissues. this is not the same as a joint making a popping sound

[mothwiingz]

finding out that non-hypermobile people don’t get food stuck halfway down their chest constantly is baffling to me. like wdym you can eat a sandwich and it doesn’t just decide to stop there

[the-fabled-disabled]

an older lady who just started at my work came up to me today and asked me if I had eds.

apparently she has eds and she noticed my knee braces the other day, and now my wrist braces. I told her I was diagnosed with hsd but that it was probably eds. she told me I could always come to her for help if I needed it.

idk but disabled solidarity is my favorite thing. I hope I can be her to someone else someday.