#language of the chronically ill

[compo67]

i'm in so much pain today ;-;

the weather change from yesterday to today has been brutal on me. my hands are swollen and red. this isn't keeping me from typing but goddamn.

[audhd-space]

ID :

“I remember you said that thing has caused you so much discomfort/pain, so I actually take note of it and after much careful consideration and hundreds of researches I actually decided to buy/build this for you.”

underneath it there are 14 green flags to emphasize the importance

THIS IS IT FOLKS.

THIS IS MY LOVE LANGUAGE.

THIS IS HOW I WOULD WANT TO BE LOVED AS WELL.

[melodymorningdew]

Ableist language content warning:

Just a PSA: Many people believe they aren't ableist but as soon as someone's disability inconveniences them in the slightest, they're immediately up in arms about how horrible this person is for being disabled.

So tired of hearing "you have to help yourself"

"Have you tried [insert completely unhelpful tip]"

"You can't expect the world to bend to your will." (When asking for accommodations)

"You don't LOOK disabled."

"Well you did ___ yesterday why can't you do it today?"

"You need to stop making excuses."

"You complain too much."

"You can do anything if you put your mind to it."

"You just have to force yourself to work you have no choice."

"Just go home if you're going to act like that [my legs collapsing beneath me/fainting/saying I'm having a panic attack]" (same people who tell me I just need to push through)

"Oh that person is being so rude" (when they are overwhelmed and unable to carry on a normal masked conversation bc they are overwhelmed)

"ADHD isn't an excuse to be late or forget things you can set alarms and have planners"

I and many others are rightfully pissed off at being dismissed and condescended to and belittled and stomped into the dirt EVERY OTHER DAY. (Not exaggerating.)

[pyjamacryptid]

me surrounded by all of my medical paperwork that disability services deems “not enough evidence” to claim support, after applying for the 5th time:

[slveepyscwrs]

Not all people with disabilities... (Part 1?)

(Disclaimer: This isn't to put down people who do actually have the severe versions of these disabilities that I mention, this is rather to stop the stereotyping and viewing of disabilities as a black and white thing.)

Not all blind people see absolutely nothing. (Most blind people have some degree of usable vision.)

Not all colourblind people see in black and white. (This is actually one of the rarest forms of colourblindness.) (Also, yes, according to the ADA colourblindness is in fact a disability.)

Not all deaf people live life on mute. (Many deaf people can hear some degree of noise.)

Not all people with autism are children. (Autism isn't a childhood thing that 'goes away,' and autistic kids inevitably grow into autistic adults.)

Also, not all people who use sign language are deaf. (Sign language is used primarily by deaf people, but hearing people may use sign language for other disabilities: Down's syndrome, autism, mutism/selective mutism, etc.)

Not all wheelchair users are paralysed. (A lot of them can stand up when needed, or even walk a few steps if it's a good day!)

Not all people with chronic pain are in 10/10 pain 24/7, but that doesn't make the suffering any less worse. (Although if you do have conditions that cause 10/10 pain take a virtual hug!)

Note: The 1-10 pain scale isn't very disability friendly to begin with, but that's a post for another day.

Not all chronically ill people have flare ups with the same frequency (some may have it every other day, some very rarely or hardly at all). Just because you're not having flare ups that often, your illness isn't any less valid.

Not all people with chronic fatigue sleep a lot. (Fatigue =/= Sleepiness, and many people with chronic fatigue actually have insomnia.)

Not all people with disabilities require visible aids. (Someone's internal suffering isn't defined by whether society deems that they 'look sick' or not.)

Not all people with mutism make no sound at all (People with selective mutism can speak normally in some situations, and even fully mute people may be able to make some form of noise.)

Also, SELECTIVE MUTISM =/= JUST BEING SHY. The name is a bit misleading, because we don't 'choose' with free will which situations we can and can't speak in, per se.

Disabled people don't owe you politeness. (We're allowed to have bad days, we're allowed to be miserable, and what seems 'rude' to you might actually be a bad flare up. Sometimes we just need to be left alone.)

Lastly, not all people with disabilities are officially diagnosed with a disability.

('Just get a diagnosis' is incredibly ableist. The fact that it's a lot of disabled people themselves pushing these sentiments is just drawing back our community as a whole. Not all people are in a financially, socially, or emotionally well enough situation to seek professional help. On top of that, the healthcare system sucks so bad that it's not surprising that some people just avoid seeing the doctor altogether. A disabled person doesn't have to have an arbitrary label to make their disability valid. Although getting a diagnosis can be a very validating experience for disabled people, it is by NO MEANS the be all and end all.)

[crippled-peeper]

I miss you mom

Happy 52nd heavenly birthday

I hope you’re proud of us kids

I’m sorry covid had to kill you

I won’t forget you. I won’t let anyone forget us

I love you

[mumistarrr]

When I did this song. The rapper Dax through me under the rug and then dusted an hearie who signed everything wrong. Of course ppl in deaf community stood up for me about this but Dax ignored all of us. The thing is. I can’t hear the music. It takes me a lot of work to do something like this. As a deaf artist I don’t let anything stop me. But this right here knowing how much work I put in. I don’t want to sign music anymore. That’s how I felt. But I will I just won’t sign his songs anymore. Hearies some of them don’t appreciate what deafies go through to show our beautiful language. I’m not only deaf. I’m disabled with chronic illness. Ppl learn to listen to any marginalized group when we tell u something. Show respect and educate yourself

[wildfeather5002]

What do you think of it when people say things like "haha this person is a loser living in their parents' basement because I think they're annoying and their opinions are trash"?

I get a bit uncomfortable when stuff like this is being said because it sounds kinda ableist towards the part of disabled community who are unable to live alone & must rely on their parents / caretakers in their daily lives. When you use "living in parents' basement" as an insult it stigmatizes the existence of disabled people with high support needs, just like using "taking pills every morning" as an insult would stigmatize taking medications on a daily basis, which is also something that some people need in order to live. I know that these insults are not always purposefully targeted towards disabled (or mentally ill) people but it doesn't really matter since these insults still contribute to the stigma surrounding disabilities (& mental illnesses).

This is what I think about it, but these are just my thoughts and I could be wrong as well.

[feelingthemode]

disability pride month userboxes part 5/5

posted these on insta throughout the month :3

[compo67]

met with my therapist and my psychiatrist today. kinda figured out that i've been struggling depression wise for the past 3 or 4 weeks. we're changing some meds around and i'm keeping up with appointments. just kind of a difficult time, you know?

[multi-fandomsyndrome]

I was at a waterpark yesterday and one of the lifeguards told us (after getting in the inflatable tube) that we had to take off any shoes, sunglasses, hat, etc. I understood hat and glasses, but I was confused about shoes especially since I was wearing water shoes that not only fit/looked like tennis shoes, they were *very* secured on, and no other lifeguard asked me to take them off

Anyway I was struggling to take off one of my shoes (bc disabled) and some random lady comes out from behind a roped off area, helps me take it off, but then says to me “there you go Cinderella”

This really confused me because A) I had no idea who this woman was B) I didn’t ask for help C) I thought it was obvious I didn’t need help because I had already taken one shoe off before the woman came over, sure with difficulty but I still did it

After we got out I made sure she saw my mom help me put my shoes back on and sit in my wheelchair.

Anyway I felt like sharing. I’ve never experienced anything like that before but it made me pretty uncomfy so I don’t even know if it would be considered ableism or not

[whatudottu]

What better way to practice new prosthetics then to piss of the bitch that got you to need them in the first place!

In other news, my pirate ocs Gali and Ido (with a third Meridi not present) who are the two sides of the fulmini cult escapees :P

A bit of backstory under the cut since they're the only fuckers I have WITH a backstory! Which btw does detail cult shit so :P big fat warning for that-

The inciting incident on Petropia that introduced it's modern underground population to the surface named the Surface Craze was in all due part because of fulmini interference at the behest of the High Override, who saw what was initially just a planet entirely made of quartz-like crystal the Override Fleet could use as a power source. Having instead found that the planet was not only populated but by a species of the living variant of that same quartz-like material - electrical properties and all - but that additionally they can regenerate their crystalline body so long as they have the energy to pull from.

Seeing this as a solution to the fulmini's energy crisis - a perpetual machine at it's finest - the High Override sought to heh... acquire some petrosapiens for themselves. To their collective benefit, a community of petrosapiens had found their faith and world shattered, previously having been extremely devoted to the Sugi religion (derived from the ancient texts of Thuugi back when their tongues were long enough to be bitten off). Instead of needing to drag away dissenters who fought tooth and nail against the invaders, this community had already shifted their faith onto the false prophet of the High Override, which already had them fall into the Coupled Override head over heels.

The cult has now expanded it's pool of prey, and like the unwilling fulmini who gives the High Override their tithe (their minds, their central colony), the petrosapien cultists pay with their arms.

50 years (or the closest equivalent) into this arrangement, 50 years Petropia spent experiencing the surface for the first time in generations, Ido was born into the cult far away from the planet she should have known as home. Any doctor worth their salt had enough brains and stubbornness to not fall into faith-based trust of the Coupled Override, so between the lack of those and the remainder pseudoscience physicians left to echo chamber themselves, when Ido began developing Excessive Compression Disorder (ECD, a nerve-equivalent disorder that causes tension fractures throughout a petrosapien's crystalline structure) despite the rather obvious visible signed she went undiagnosed and improperly treated. At the age of 200 - a petrosapien's coming of age, and 50 years after Petropia's destruction - it was Ido's time to pay her tithe and begin her offerings to the High Override.

Gali - her sacrifricant - was to sever her arms below the elbow, as was procedure. What wasn't was the near explosive response from external pressure, or the last compressive force needed to completely shatter what had already started to break.

Cutting people's arms off is technically already a violent act however, though the lower arms survived the procedure as expected, the elbow and even upper arm had scattered shards of glass-fragile crystal in a visceral radius and physically severed through the sacrificant's central colony; then Gali was abruptly severed from the High Override after they felt as if a limb began necrotising. Sacrificants nor executioners really need an active memory to do their jobs, so Gali didn't need to have memory for however long their colony was one with the High Override's. Forcefully amputated from the larger system like an infection without any of the memories of being apart of said system however, kind of rewinds a colony back to the people they remember being long before any interference.

While Ido was caught staring wide-eyed, fearful, and newly lacking the limbs she thought she could regenerate easily - her arms try and try but they shatter like glass, crumble like sand, and she violently shudders like gravel grinding into each other - Gali regained access of their long unused senses and found a sea of hostile enemy combatants staring back. With all the training of a military general with none of the present self-awareness to realise they were the cause of the currently very panicky rock's lack of arms, Gali almost like a flick of a switch reverted to the many rules of engagement regardless of the fact that they were sporting exposed central colony that may or may not have been another's with their own collection of memories.

Seeing to rescue someone who had all their rights to fear them, Gali and Ido fled to the stars.

With a few language barriers mixed with someones learning they haven't spoken much longer then anyone thought they did, discovering how planets that were meant to be each other's home have been destroyed and irrecoverable, and learning the before and after to the horror story that is the High Override and their cultist network of external nerves and collective colony, Gali and Ido may or may not have gotten arrested :P

And they probably would have been tried for crimes neither of them could particularly understand not having learnt any of the common universal languages, up until the point the prison ship was raided by a collective of pirates only working together for equal cuts of the profits (the Plumbers used a prison ship to transport the Annihilargh while they still thought it to be a threat, what's to say they wouldn't simultaneaously transport prisoners - aka, the fucking point - with some high sought-after McGuffin). The pair would meet Meridi, a galvan with a penchant for mechanics and especially the kind that deceives an observer like - for instance - an android suit.

Meridi isn't here but gist is, she pilots both her own ship and an android resembling a human, and spies a pretty prize of walking talking taydenite. Instead of scoring a deal, she takes into consideration (perhaps with a cold calculation rather than a warm sympathy) the condition of ECD affected crystals and how much effort it would take to actually refine it and deems turning Ido into pocket change isn't worth it. In fact, further taking note of the explosive volatile footwork of crystallokinesis with the additional muscle of a fulmini veteran, actively helping Ido (and Gali by proxy) would potentially turn out more of a profit.

Gali isn't in dire need for hiding, but Ido uses shadow and a human-mouth jaw mask as tools to conceal what price her skin costs, while Meridi attempts to make prosthetics for a species that doesn't have nerves that also takes into account the unstable electrical currents produced by the compression of crystalline motor functions.

A bit of a tangent in a very long not-even-bothering-to-summarize backstory, I want to talk about petrosapien prosthetics, at least ones that can have 'motors' like Ido's arms (not like Chio's leg). With no external muscles to help strap in and extend the remnant of tendons humans have running through limbs, petrosapien exoskeletons do not offer the same interconnectivity and do not have easy ways to extend what had been cut off. Myoelectric limbs again by human standards also do not fit petrosapien nervous systems either, especially since the only nerves they have are in their equivalent of the central nervous system which also interacts with internal organs, the peripheral nervous system of a petrosapien operates with the highly structured yet individually unique non-standardised crystalline formations and compression. What Meridi does however is take material from Ido's crystal to create the joints in a conductive copper rod prosthetic (insulated in rubber to prevent harm to others), where Ido's compression triggers electricity to run down to remotely compress the crystal joints, which compress under the pressures of electricity and send the signal to be compressed again until motility is achieved.

And that is a lot of context :P woops- I either make no backstory or I make this convoluted piece of moving puzzle pieces, the duality of man I suppose :P

[aintgonnatakethis]

whenever i see the view of 'always be 100% honest with the medical professionals providing you with healthcare' i just... how much privilege do you have to have to not see the pitfalls with that statement?

i understand 'always tell first responders what drugs you've taken'. but when it comes down to trans healthcare or people who're disabled or have "scary" mental health conditions. do you really think being honest the entire time is safe?

[galaxyofjedi]

Ok so this is a sort of vent/rant post and not at all Star Wars but I don’t have any other accounts so I’m putting here.

I have 3 chronic stomach issues. 1 diagnosed (Gastroesophageal reflux disease) and 2 undiagnosed and people in my family have been pissing me off. SO here is what not to say to someone with chronic stomach issues/pain! (P.s. if anyone thinks they know what I’m experiencing please chime in!!!)

“I used to have acid reflux and I took — and then it went away! I bet it will help you!”

I have taken sooo many medications. And it’s not just normal acid reflux (which lots of people can get and is super easy to treat so don’t panic if you have it!) it’s very much chronic. Please please please stop suggesting stuff to me I guarantee I’ve either already tried it or know it won’t work.

“Going for a walk/run can really help gastro issues! Have you tried it?”

Now to be fair this can be true. My issue with it is that one of my issues cause pain and discomfort every time I stand up let alone walk. I have explained this many times to many people and I still constantly get this “helpful tip”. Please listen to me when I tell you I can’t do something.

My stomach hurts too when I eat/drink junk food. You’re overreacting.”

I guarantee you I am not. I’m sorry that it happens to you but knowing how I feel it’s probably not the same thing. I either feel like I’m on the verge of throwing up all day and sometimes for multiple days at a time. Or I’m in pain every time I stand up and try to do anything. Oh and it can be when I eat anything not just junk food. You don’t know my body and how it feels. And you can’t tell because I try to hide my discomfort to make you happy and to attempt to get on with my life. Please don’t ever tell me I’m “faking it” or “overreacting” you have no idea.

Anddd last but not least:

“Don’t eat/drink that. It will hurt your stomach.”

Yes you are right. The ice cream or cookie I’m about to eat probably will hurt my stomach. But I track everything I eat and have had so many tests done but still cant find a trigger. Junk food does usually trigger it but anything can, so I might as well eat/drink something I enjoy when I get the chance. Also, DONT TELL DISABLED PEOPLE WHAT TO DO WITH OUR BODIES!!!

Anyways thanks for coming to my ted talk. I really wish people in my family listened to me :)

[bluesidedown]

Hi I'm still surviving yay

[consider-your-potatoes-mashed]

Why do abled people always fucking suggest the most basic things to “fix” disabled people’s problems/disabilities and act like they know better than we do???

If you, a person who does not live with the disability you’re trying to “fix”, can think of a solution off the top of your head without any research, experience, or even trying to actually understand what we have tried and what we’re actually dealing with don’t you think that we might’ve already or are already trying that???

For me this comes most from my mother saying that I need to change my diet (even though I have so many sensory issues surrounding food and have tried and failed so many times), that I need to lose weight (ma’am I am trying), that I should try stretching (you know what I’ve tried that for years and guess what it just stretches my ligaments because I’m fucking hypermobile and it ends up causes me more pain), that I need to exercise more (I’m trying but I’m also limited by pain. Pain that keeps me from being able to exercise most of the time. Pain that usually gets worse when I try to exercise), that I should try to not use my mobility aids because I’ll become reliant on them (ma’am they help me. They are not hurting me. They are what keeps me able to do stuff you want me to be able to do. Why should I try to not use them???), and so much fucking more

Like seriously abled people stop pretending you know our bodies better than we do I promise you you don’t. Even doctors (as shit as they might be) are supposed to listen to us before they even start to make recommendations (yeah many don’t but they’re supposed to)