#chronic illness means physical

[sapphicautistic]

this poll inspired by me waking up 2 hrs earlier than usual and still being so nauseated about it 4 hours later

if you wanna elaborate in the tags i'd love to hear!! If I could have more options I'd have added in with/without POTS/orthostatic intolerance options to this, that's something I'm curious about.

[camellia-thea]

i know we talk a lot about the isolation of chronic illness and disability, but i really don't think ablebodied folk get it.

i have made one new friend in person since graduating highschool in 2020. she is my housemate's girlfriend. she stays over frequently, and the only reason we are friends is because she stays over and we have shared university papers. i would not have had the opportunity to befriend her otherwise. that is in the space of three years.

i don't go out much. i cannot guarantee that i will leave my house within any given week. technically i have class i need to go to twice a week for an hour, but those moments aren't time for friends, they're time for classwork and i don't interact with people in a social capacity there.

i simply do not get the opportunity to meet people.

i cannot go out with friends and meet new people that way, because my social circle is already so small, and i don't have the energy to go out half the time anyway. when i do, i suffer for it later.

i don't meet people on campus because i'm immuno-compromised, and ableds seem to have forgotten that we are still in a pandemic.

i don't go to clubs or go out for the sake of going out because i can't. i've grown agoraphobic, because i am so worried that something health related will happen and i'll get stuck somewhere alone. i hate leaving the house because of the guarantee of an anxiety attack which leaves my body more likely to flare. it's a vicious cycle of isolation.

i am not the only one who has experienced this -- i can still leave the house, i can still go and visit friends with assistance. i struggle, but at the end of the day, it's still an option. there are others who are completely isolated.

the worst of it is that people leave. people get tired of the 'i can't come, i'm sorry', of the 'hey, i'm sick, can we postpone?'. even people who you love and hold dearly will stop trying. and it's awful. you have to sit and watch these people who you love walk away because they can't deal with your disability. i don't have words to describe how much that hurts.

it really is impossible for ablebodied people to understand, because for the majority of us, this isn't temporary. this is just how we have to live. and your social circle can only really get smaller.

[asharestupid]

I don't think people understand how bad cfs actually is. Like whenever I tell ppl a lot of them are like "oh haha yah me too" and just... No??? A few hours ago I was so tired I couldn't even move (not an exaggeration, I was literally stuck in bed, laying down without being able to even turn over) cfs is an actual thing and I hate that ppl do this with things they don't understand. Disabilities aren't adjectives.

[anotherqueersnailowner]

dude why don't we have more public benches throughout towns. I'm fucking disabled if I have to walk the mile back home after work I'm either not gonna make it or I'm gonna end up laying motionless on the floor for the next half hour

[nightmaretour]

Disabled person: These plans for walkable cities are literally impossible for people who can't travel long distances without motorized transport or who require large mobility aids to live in, we should probably work on that

Able bodied self-proclaimed "leftists": Ugh disabled people are so petty! I can't believe you're this angry about the word "walkable!" You just want to make an issue out of everything!

[halloweeneva]

I remove my mask (ADHD) only to reveal a second smaller mask underneath (Chronic Fatigue)

[crippy-tangerine]

Watching people who complain about “fakers” who “steal resources from the actual disabled people” try to explain why that is supposedly a real problem is completely ridiculous. Because their arguments boil down to “there’s limited resources for this disabled group” pretty much every single time. And yes, sure, sometimes there genuinely are limited resources, and it’s a very big problem! But do you know whose fault that is? Because it’s not actually the fault of the alleged “fake disabled people”- it’s the group or organisation that creates and controls the distribution of said resources. It’s not the fault of individuals, “fakers” or otherwise. It’s the systemic fault (and failure!) of the governing bodies that create resources for the disabled people. Which, to be honest, shouldn’t be a hard concept to grasp if you’re already active in disabled activism spaces… As these people who “call out fakers” claim to be….? Okayyyy 😐. (/sarcastic.)

So like, watching some folks try and blame “the fakers” for the systemic ableism we all deal with is actually comical- and we mean that in the worst way possible. And, for the record, the hordes of “fakers” likely do not even exist. They’re probably just disabled people that you don’t like the look of, so you’re using them as scapegoats to avoid the very blatant failures of an ableist society. You’re not only failing to support disabled people through your disbelief of people’s lived experiences- you’re also failing us all by refusing to acknowledge the actual fucking problem. If you go around telling people they’re faking being disabled, first of all what an absolute L, second of all try shutting up if you can’t say anything constructive- and third of all, maybe do something useful instead.?? Why waste your time trying to bully random disabled people for the crime of existing, when you could redirect some of that energy into bullying large corporations/companies/governmental branches into being less shit.???

Like if you need to bully something, can you at least target the governing groups that profit off of systemic ableism.?? Instead of bullying some random newly-diagnosed teenager or whatever the fuck, go and bully some huge American company that charges $$$ for one bottle of insulin or something. Get a grip and get creative, for fuck’s sake.

TLDR: ableism = massive L, but bullying ableist mega-corporations = massive W! (/not even joking.)

[autistic-katara]

me: dude im not even feeling that tired rn and haven’t for ages oh no oh fuck im probably accidentally faking my disability-

my chronic fatigue, loading ammunition into a massive fucking cannon: damn really bro?

[50stressballs]

It’s so weird having my physical health tank when my mental health is the best it’s ever been.

Like whenever someone asks me how I am I’m just like “well my bones hurt, and my muscles hurt, and I can work maybe 3 hours a day before I collapse from chronic fatigue. But like the world keeps on turning, so I’m vibing dude B) ”

[thedisablednaturalist]

So I'm confused

My new doctor says that my MRI results only show for my thoracic spine "Presence of mild disc protrusion at T8-T9. No significant neural foraminal or canal stenosis. No nerve impingement. Follow up as scheduled to discuss plan of care"

And for my cervical spine: "No canal stenosis. Mild C4-C5 left neural foraminal narrowing"

I honestly could barely decipher this myself but she says that it means I don't have calcification or degenerative disc disease but my old spine doctor said it was? She says because I'm so young 🚩 that I shouldn't be in pain from it and it is probably all due to my fibromyalgia. She did say when I get older it'll probably progress?? She said I don't need my injections but she would refer me to their pain management specialist for a second opinion just in case because I did have them before and they helped my pain. I'm so confused and tired and honestly feel a little like crying because I feel like I'm being pushed back to square one. Everything my old spine doctor told me made sense and all my symptoms lined up with what he said. So what, was he lying or exaggerating? Am I somehow faking? Then why the fuck does my spine hurt so bad and why do I get numbness in my hands and feet? Why do my knees hurt so bad? It can't all be fibromyalgia can it? Somehow I have to be sick enough to get my pain managed and taken seriously but not too sick because then I can't be cleared to do work I've already proven I can do.

[jemineye]

happy disability pride month!! ft my new wheelchair 🩷👩🏼‍🦼

[theghoulofme]

i saw opeth yesterday. it was great to be at a festival and they played my favorite song too. and i could see really well from the wheelchair stands!

but then theres the flip side of knowing im gonna be in a lot of pain for days or weeks. if i got covid i might just become severe again and dont know how long it will take to rest it out haha.. was wearing a mask if i was close to people but no one else wears a mask anymore so i dont know.

i had fun but the question is, at what cost?

[chronically-chaotic-cryptid]

I used my wheelchair for the first time in school today and it's so strange how it becomes this open invitation for people to guess at or question your medical status. Like, the assumption that this is a permanent thing, or that I'm injured (I've never seen a bright green hospital chair but ok) or to ask me about how long this will be going on for etc. etc.

And, I don't really blame the people asking all that much. For them, it's a way to show that they care about my wellbeing. It's the society they've all grown up in that tells them that this question is ok to ask and fails to educate them about disability. That's what's created this. Trying to show care ends up becoming ableism and ignorance when the world chooses to ignore disabled people and our lives.

So, yeah.

[inhumanliquid]

How's the body treating you

Physically?

I was really prone to ear infections when I was little. I haven't gotten one in years, but my ears have continued to hate me. I have tinnitus (ringing in the ears [constant]), I can't ignore "small" things like the ticking of an analog clock (hence why I prefer digital) and said "small" things really piss me off, and recently my right ear has decided to do this thing where I can't lay wrong or wear my earbuds basically at all or it gets not painful but really fucking uncomfortable (I have been suffering since last night this time and these people are unnecessarily loud).

For as long as I can remember, walking for a little too long has made my legs unbearably sore when everyone else was perfectly fine. My feet were a problem too, but arch support socks and memory foam shoes fixed that part.

I'm always cold because I'm chronically anemic but I sweat my fucking tits off (unfortunately not literally) in the summer anyway for some fucking reason.

I'm always tired due to a combination of the anemia (chronic fatigue) and the seemingly also chronic inability to get more than four hours of sleep on anything even remotely resembling a regular basis.

I get really bad sunburns really easily, and sunscreen doesn't do shit. Everyone else in my family is perfectly fucking fine being out in the sun for more than five seconds (slight exaggeration) without all their skin peeling off.

Almost every time I take a shower, I get really fucking lightheaded. Like, so bad I really do risk passing out simply trying to act like a human person.

I suffer from really bad migraines. They make the fatigue like ten times worse, they make it physically impossible to keep my balance when they're especially bad, and they hurt so fucking much I might as well be in literal Hell.

[divinesouldariax]

it doesnt have to hurt more to be love!

it doesnt have to hurt more to be love.

there’s been a lot of very good meta about ashton, taking hits, carrying his friends, carrying heavy things for their friends, doing things that hurt, that make it hurt worse, to protect his friends from pain. because he knows how to carry pain. because they’re used to it. because they know he can keep going. because, because, because it’s what he knows, it’s all he knows.

and it’s true. ashton loves them. ashton is willing to hurt more for them, and it’s because they love their friends.

but, but, but. he shouldnt have to. people with chronic pain shouldnt have to do things that make the pain worse. we might choose to, and that is definitely an act of love, but feeling like they dont have a choice, that taking on more pain, silently, suffering without ever asking for help or saying no, i can’t do that, it hurts too much...

because, listen. for most people, chronic pain is limiting. it says no, we’re not climbing those stairs today. no, we can’t lean down and pick something up off the floor. no, we’re staying in bed with a heating pad and telling our friends sorry, i can’t make it today after all. i know you were looking forward to hanging out, but i can’t do it. maybe there’s some people with chronic pain that never have days bad enough that it limits them, but i’ve never met one.

so when i see ashton, whose friends didn’t figure out that he has chronic pain until they literally felt it in his mind, keep their pain under wraps for over a month, never saying no to carrying something (a heavy statue, fcg up a ladder, orym after he fell, laudna’s dead body for miles), swinging his hammer to defend and protect, literally picking losing battles to see if anybody is watching...to me, that doesn’t read as “look at this strong, empowered person with chronic pain who never lets it limit them”.

to me, that says “this is a person who thinks that love cannot exist without a worsening of pain, who won’t let themself pause or say no or even tell anybody that it hurts because he is deeply, deeply afraid that refusing pain is the same thing as denying his friends love”.

and that’s fucking devastating.

it doesnt have to hurt more to be love.

[yonpote]

ok i literally only did two prompts but thats it for now i will get to the ones in my inbox tomorrow ✌️✌️