Theo (xe/they)

Chronically ill and Genderqueer Account to talk about disability related things

[livinganddecaying]

POV:

It is 2020. I have pain when exercising. Few months go by, I take a fuck ton of naps. It’s whatever, quarantine. Back hurts all the fucking time. I have trouble walking.

2021, Random body pains. Hip, jaw, shoulder? You name it, it hurts like a bitch every once in a while

Mother takes me to doctor. Prescribed physical therapy. Extremely painful, no progress, so I stop after a few months.

Teachers notice bad handwriting and walking funny, call home asking if there are fine motor issues they should be aware of? No, my mom tells them, I’m just fine.

Halfway through the school year, I’ve been back in person for a while, it still hurts to move, I start crying in the fucking hallway, have a hell of the time trying to convince school nurses this is my normal plz let me get back to class

Eventually we go to the doctor again. About two years in to whatever this is, a doctor has the genius idea to finally do fucking bloodwork. They tell me positive ANA test, it’s probably Lupus.

Doctor does more shit, diagnoses me with Lupus. Great.

I find a fucking pediatric rheumatologist specializing in inflammatory diseases. First appointment, she tells me it’s not lupus.

Well what is it? She has no clue. She just knows it’s not Lupus. Great.

More fuckery ensues, too many fucking blood tests. Have you tried exercising? Have your tried losing weight?

I can barley fucking walk

I am starting college in less than a month, no clue what’s wrong w me. Yay.

[cake-n]

I love that people can get through illnesses and disabilities with religion but I hate religious people manipulating disabled and sick people with the promise of a cure .

God won't cure me , rocks won't cure me and neither does gut diets but they can help feel better. Don't blame sick people for their pain because of their "lack of faith" or mental health.

[livinganddecaying]

Fellow college students: microwave casseroles

[livinganddecaying]

DO YOU KNOW HOW HARD IT IS TO GET PASTA BOTH VEGAN AND GLUTEN-FREE

[livinganddecaying]

How to convince my mom to get me a mobility aid (I’m a minor)

[heyatleastitsnotcancer]

Seeing the posts about pharmacies refusing to refill birth control (which is 100% awful) after the roe ruling and all these people saying stuff like "how could they be allowed to not fill a prescription!? This can't happen in our control! It's got to be illegal"

And it's like, uhhhh this has been happening for years with controlled substances and chronic pain patients. It's been happening to trans people trying to get hormones too. You just wouldn't listen to us.

It doesn't make this situation any better or worse. It's fucked. But it's not a new occurrence.

[wobblefloss]

STUFF I DIDN'T KNOW WHEN I WAS STILL ABLED...

You end up inventing a language.

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Words and phrases I used before just do not cover these new chronic illness and disability sensations.

Explaining to doctors aside, because they need specifics and concrete examples and I end up talking to them in exhausting paragraphs and lists, I still want to have casual conversations with people who know and care about me. Who ask how I'm doing.

I need shorthand for recurring weirdness. So I burble something and if it sticks? Woo hoo! ¡Vocabulario!

I tell friends, "The bottom fell out," when my body has pulled the energy plug on my brain and I am powering down right now. Probably gonna sleep? Right here. Wherever that is.

I use "skittles everywhere," as a quick summary of 'yes, I had my thoughts together and it was a pretty good day, but I got confused about something suddenly--maybe it was an emotional hit? maybe a stress situation?'--and my thoughts scattered like I dropped a whole bowl of candies and no, I cannot do anything useful about it; I am gonna stand here and blink at this debris field for a bit cause I have completely forgotten what I was doing.' It's kinda like "the bottom fell out" but more about thoughts and not so much about energy.

There's words I picked up online in disability spaces like "spoons," "flares," "scrombled," and "potsie." (More about the legit joys of online community later.)

And then there's using words that everyone uses, but not how everyone uses. My energy is fragile today. My thoughts are just a crust, so I don't trust them to last. Oops, yeah. Fell through. Now ham-brain.

And it's communicating, but quick and kinda surface level.

Like, we all know "pins and needles" if, say, your foot falls asleep. But there's no cultural touchstone for, "my circulation is very poor today, so the weight of my blood is pooling in my lower limbs and I can literally feel myself getting dumber the longer I stand up because my brain is not getting enough oxygenated blood right now and it is kinda like drowning, yet there's no sense of breathing urgency or air hunger just now, but that part will be happening shortly because my heart rate is climbing and I'm starting to prickle with sweat."

So I just tell my loved ones, "Feelin' potsie," and they cut me some slack. And find me a chair. And that's good enough for now.

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Being able to communicate with other people keeps me from despair, honestly. I recommend building your own language without shame.

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Seems like something we should all know.

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.

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Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.

[legsdemandias]

This hack will save your teeth: there are no “right” and “wrong” times to brush your teeth.

[legsdemandias]

It gets in your head that you brush after eating when you wake up and when you go to sleep. Yeah that’s all well and good, but those are times that don’t have a lot of motivation and control…So just…brush your teeth at a different time. 

You go to the bathroom in the middle of the day and are like “I should brush my teeth” DO IT!!!! Don’t listen to the other half of that sentence that says “shit but it’s not the right time” 

I don’t care if you’re about to eat, or get coffee, or whatever. 

If you are there and you want to…do it. 

[legsdemandias]

Honestly this hack will solve most of problems. Just stop assigning meaningless “right” and “wrong” to tasks and start saying “I can pretty much do whatever I want whenever I want and society and its expectations don’t really matter to me”. 

If there’s no barrier in the first place you don’t have to get over it. 

[spooniestrong]

[briarpatch-kids]

Disability tips and ideas from abled people: "buy a robotic hand that will flex for you so you can open and close your hands" "stair climbing wheelchair!" "Here's a robot that will use AI and complicated technology to feed you"

Disability tips and ideas from other disabled people: "get a bidet hose so you can freshen up when full showers are too hard" "stick the fork handle in a piece of pool noodle so you can actually grip the damn thing, if that doesn't work, tape it!" "you can totally tip your chair back on the anti-tip wheels and recline if you need to, just don't try and propel like that."

The difference is low vs high tech, cost, and general usability. Disability tech and aids need to pass a certain line of "is this more help than hinderance?" before they become useful. Cost, ease of use, need, and a couple other things all influence that.

[disabilityhealth]

If someone tells you they are disabled, don’t disagree. Don’t argue. It’s not up to you, nor is their admission tragic or shameful in any way.

Believe them, support them, and respect them.

[rainbow-reilly]

The best thing about Frankie Stein being canonically non-binary is there's no defensible position against it. How you gonna argue "biology" when you're talking about a reanimated corpse cobbled together from half a dozen different dead people? You don't know if they were all women. What if their left foot has XY chromosomes? Die mad about it.

[cautiousgoose]

When abled people try to make your disability out to be more of an inconvenience to them than it is to you.

Like oh, me sleeping all day because I'm exhausted and in pain is hard for you to see? No worries, it's totally good for my mental health to not be able to do shit like everyone else! Good to know I'm a burden to you on top of being unable to do the things that I want and need!

Anyway, I think disabled people should get compensation every time ableds make our disabilities about them.

[notabled-noodle]

you can hate the word “disorder” all you like, but as someone who has OCD, ASD, and ADHD… disordered is the exact right word to describe my state of mind at any one time

[sunflower-sunshine1192]

There is no marriage equality until disabled people like myself can get married without losing benefits to survive

[nebulae-d]

" Young disabled people are all faking it, there's nothing wrong with them, they just want the attention! "

Me, literally sobbing in union Station because I was so angry about having a mobility aid and not being able to do the same activities as my friends because of it and shaking because I kept getting stared at:

young disabled ppl are valid and if you think otherwise unfollow block whatever this is not the place for your bigotry.

[kagayakuseiza]

“Picky eaters are made, not born.”

Uh-huh, no, tell me you don’t understand sensory disorders without telling me you don’t understand sensory disorders…