#spoonie rants

[nondivisable]

disabled people are allowed to have hobbies that clash with our disabilities by the way

I'm allowed to like journaling even if my hand tremors make it so I can't do something as "pretty" as an abled bodied person

I'm allowed to like crocheting even if it's bad for my joints and it takes me double the time it would take someone else to finish a project

and yes I'm trying to switch to knitting which is lighter on the hands, but even that - even fucking using my phone - makes my finger hurts

I'm allowed to complain about it, just like you - specially if you're abled - are not allowed to tell me off about it

it's so hard for us to find joy, you're not allowed to police the small things that help

#chronically ill #spoonie #chronic pain #cripple punk #cripplepunk #ableism #disability activism #disability justice #chronic illness #disability rant #arthritis

[existennialmemes]

Something I haven't seen spoken about a lot is the psychological impact of being chronically ill and experiencing horrific symptoms, and knowing that literally no one can help you.

I could call a doctor, but I already know what's wrong. There's literally nothing they can do for me. And I can't afford to go just for reassurance.

I'm just in a flare and sometimes it's Like This. And you just have to swallow symptoms that live in the nightmares of well people, because you can't just have an emotional breakdown every time you're in a flare.

So I'm in horrible pain and distress, and I can't call for help, because no one can help me, and I have to act like it's fine, so I don't worry other people who get Very Upset that I can't just Fix It

And there's just a deep psychological burden in that, that I don't think well and able bodied people ever really think about.

#rant #chronically ill #chronic illness #crohn's disease #spoonie

[matchakuracat]

"You're so lucky! I wish I could just stay at home all day instead of going to school or working"

I have to go to school/work just as much as anyone else does, the difference is that I physically can't. Not having the same choice as abled people does not make me lucky. Staying at home because I can't go to school or work does not mean I get to do whatever I want. Staying at home every day without being able to do anything is not fun. Not being able to do anything but lay down in bed or on the couch gets boring really fast. That's not even taking the chronic pain I endure into account.

Being chronically ill is not being lazy. It's not a choice, or something anyone would choose. It's a disability.

#sigh #rant #chronically ill #chronic pain #chronic illness #chronic fatigue #laying on my couch wishing i could do anything else annoyed at the people thinking this is a choice i made because i enjoy it #chronically fatigued #actually disabled #physical disability #physically disabled #disabled #disability #disabilities #spoonie #low spoons

[audhdnight]

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.

#connective tissue disorder #hypermobilty syndrome #joint pain #migraine #chronic migraine #migraine attack #invisible disability #spoonie #disabled #disability rant #nightramblestm

[tofu-bento-box]

i’ve started saying “i’ve been having health issues” like some sort of suburban mother and gotta say. would highly recommend. lets people know you’re not doin’ too hot without leaving room for questions. gets them off your ass. makes you mysterious. am i shitting myself blind or wasting away like a delicate victorian maiden? who knows! not you!

#disabled #spoonie #chronic illness #chronic pain #headache #migraine #chronic migraine #do not talk to me #if i wanted to elaborate i would #but you don’t get rant privileges! #the Social Rules prohibit it

[wheelingwithgrace]

One thing I wish more abled people understood is that even with accommodations disabled people often struggle with finding and maintaining employment. A lot of workplace policies cater to abled people and the assumption that no one will ever be sick. For example , I just started a new job and will probably be terminated due to the fact that within the first 90 days of employment, a person can only call off 3 days. I believe it gets bumped up to 6 after that in an 8 month period? A doctor's note does not excuse it either. One of my call off days was used for surgery and recovery.

In other words , even for an otherwise healthy person, they expect them not to have any issues pop up that could require them to take an extended period of time off. "Oh, you broke your leg this morning?" I'm sorry you still have to come to work, or it counts against you, and you could face termination.

I, as a disabled person, get told to "stop being lazy and find a job," and these are the policies I'm expected to conform to.

#disability #disabled #spoonie #actually disabled #chronic illness #neurodivergent #ableism #physical disability #invisible disability #ableist bullshit #fuck ableists #actually chronically ill #chronically ill #rant post #mobility devices #mobility aid

[decora-kai]

Yk i wish medical professionals could actually act fucking professional and understand that being in constant pain is not something that 'everyone has' or 'just growing pains'. I want them to recognise that I'm not just a whining kid who wants attention, or an unhealthy kid who just needs to exercise. It fucking pisses me off. I'm also pissed because I feel like my level of pain doesn't warrant any help compared to others. I know some people with chronic pain are bed bound 24/7 and because of fucking medical gaslighting I feel like I'm not worthy of a diagnosis because I'm not also stuck to bed forever. Like Im with my chronically ill friends who have to deal with such bad pain that they probably will never be able to leave their house and I feel for them, but just because I'm not 'as bad' as them doesn't mean I'm just a pussy bitch.

#chronic pain #chronic illness #fibromyalgia #tw vent #rant post #spoonie #medical gaslighting #disabled #cripple punk #cpunk #Medipunk #pissed off #medical trauma #transmasc #queer

[neuroticboyfriend]

yeah but could an abled person do this *randomly loses grip strength and flings object across the room* (reverse telekinesis)

#gravity betrays my neurons #julian rants #disabled #disability #chronic illness #chronically ill #spoonie

[chronically3mpty]

If you’re talking to someone with a disability and the idea of telling them they’re not trying hard enough crosses your mind allow me to introduce you to the concept of keeping your mouth shut.

I don’t care if they haven’t tried in 20 years. Just fucking shut it.

#chronic illness #chronically ill #chronic pain #spoonie #nightly rant #yes this is personal #yes I am pissed #shut the fuck up challenge

[chronicsymptomsyndrome]

How do I recover from severe burnout with an overwhelmingly messy recovery space

How do I clean my overwhelmingly messy recovery space properly if I am severely burnt out

How do I recover from severe burnout if I’m constantly using all of my energy doing the bare minimum

How do I recover from severe burnout

How do I recover

#audhd problems #autistic burnout #adhd burnout #burnout recovery #burnout #mental health vent #autistic thoughts #audhd things #messy room #messy house #executive dysfunction #spoonie #chronic illness #neurodiversity #neurological disability #physical disability #autistic rant #adhd rant #autistic things #adhd problems #living with adhd #adhd life #untreated adhd #unmedicated #late diagnosed autistic #audhd creature #audhd struggles #adhd autistic #adhd adult #autistic trauma

[nondivisable]

IM SO MAD AT THE SHAME SOCIETY PLACES ON DYNAMIC DISABILITIES

yes, I was walking unaided yesterday; yes, I am using forearm crutches today

yes, I was using forearm crutches but left them behind to go to the bathroom yesterday; yes, I need to use them even to walk two steps today

yes, I went up the stairs unaided yesterday; yes, I needed my crutches to go up to the stairs today; yes, tomorrow I might need to scooch upstairs on my ass because I won't be able to walk them

yes, I walked unaided to the car to get my crutches out of the car in the morning; yes, I will use them to go on a walk in the afternoon

DISABILITY CAN BE DYNAMIC, MOST PEOPLE ARENT ON A FIXED POINT OF SUPPORT NEEDS AND MOBILITY, WE'LL HAVE GOOD AND BAD DAYS AND I DONT NEED TO EXPLAIN MYSELF TO YOU

#cripple punk #cripplepunk #spoonie #chronically ill #chronic pain #crutch user #disability activism #ableism #chronic illness #dynamic disability #disability rant

[satansfavoritedyke]

Not to disability post on main or anything but I'm just about sick and fucking tired of so-called "medical professionals" who are supposedly "specialists" (i.e. rheumatologists, for example), thinking they can slap me with a myofascial pain syndrome/fibromyalgia/chronic fatigue/hypermobility diagnosis, tell me to stop eating gluten, and call that a done and dusted day on the job when those diagnoses don't even BEGIN to explain the majority of my symptoms.

What about the fact that I randomly run low-grade fevers with no evidence of other infections (flu/COVID/RSV), what about my positive ANA factor, what about my low igA levels, what about my chronic iron deficiency anemia, what about my MULTIPLE documented activated EBV infections that have damaged my spleen, what about the fact that I have no reflexes in my knees, I could literally keep fucking going.

I'm so fucking sorry that I'm a fat AFAB trans person with the kind of disabilities that land me in medical appointments multiple times a week, but a doctor who hasn't cracked a fucking textbook since 1997 does not know more about my condition than me, the person living with my symptoms 24/7. And quite frankly I'm not going to be jammed into a diagnosis like fibromyalgia which is the clinical equivalent of "fuck off and die" disorder and a classic excuse to just categorize and disregard patients with complex symptoms when doctors don't want to do their JOBS to figure out what's actually wrong. There is something wrong with my immune system and I need TREATMENT, not a convenient label to send me to my grave with. I refuse to be a docile "ideal patient" and I am not afraid to be a "doctor shopper" either, because what I think medical professionals forget is that Y'ALL work for ME and I CAN and WILL fire you if you're fucking useless.

DO. FUCKING. BETTER.

#cripplepunk #cripple punk #cripple problems #disabled vent #disability vent #disabled dyke #medical malpractice #medical maltreatment #ableism #medical ableism #medical fatphobia #medical rant #disabled liberation #immunocompromised #physically disabled #chronic illness #spoonie #you can call me al

[stardust-maple]

It really sucks when able bodied people forget you're disabled but don't trust you to handle your disability at the same time.

Being asked after is nice sometimes. But It's not nice to be treated like I've done something that's going to hurt me every time I do things. I know what I'm doing. When I do to much and I know about it, I can handle it just fine.

They just keep reminding me to take care of myself like I would have forgotten to.

You forget. You don't remember.

I remember. I always remember.

#physically disabled #chronic illness #chronic pain #chronically ill #spoonie #chronic condition #chronic fatigue #amps #disabilties #cfs/me #disability #disabled #actually disabled #stardust maple #ableism #casual ableism #rant #vent

[tofu-bento-box]

// serious post

here’s the thing i don’t get: people tell you to communicate your feelings, and then react negatively when you feel something they don’t think you should.

i’m ill in six different directions: my feelings are mostly negative and generally illogical. i get upset for reasons that i know don’t matter in the bigger scheme of things. but i can’t express that anger or hurt, because then people think that i am selfish, and entitled, and a bad friend. on the other hand, though, i’m also bad at hiding my feelings, and saying you’re okay when you clearly aren’t is also rude. so it’s just a constant struggle between “how much can i say to make this person feel that i’m answering truthfully, without them deciding i’m a selfish asshole.”

people tell me that you can’t rationalize away your emotions, and then react with disgust when i can’t do that for “the things that matter.” i’m upset. i know i shouldn’t be, i’m upset that i’m upset, but you sitting there judging me isn’t exactly going to help the situation. i know that whatever’s going on with my friends is more important than how it affects me. but then what does selflessness look like? is it not being upset in the first place, or is it just hiding your expression of your hurt? am i incapable of being a good friend because i can’t keep myself from feeling things i shouldn’t?

i just don’t get people sometimes. it’s like everyone has a rulebook for what’s allowed, and they just forgot to give me a copy. i get told communicate, communicate, communicate, over and over, and everyone forgets to mention what i’m meant to be conveying. because sometimes it really seems that what they want isn’t the truth.

#vent post #personal vent #not about anyone here #rant #chronic illness #migraine #spoonie #autism #actually autistic #autistic things #autistic adult #social rules #nd #neurodivergent #neurodiversity #autism problems #chronic pain #disabled #disability #i’m genuinely confused #this is the one thing i can never seem to get #good communication #eludes me it seems #communication problems #serious post #advice #need advice

[audhd-space]

// RANT

idk how many of you in disabled space here on tumblr are still masking outside, but I do

and today I was attending a wedding of a friend as bridesmaid and was told to leave if I refused to comply with removing my mask during a photography session with the bride and groom

I didn’t take well being disrespected in public so I left, heartbroken that I was cornered and pressured to remove my mask

I am still crying and I don’t know how to process being treated like that in public spaces

Ableism is discrimination.

And discrimination looks like this.

#chronic illness #disability #masking #face mask #rant #personal #spoonie #ableism

[decora-kai]

I been doing some thinking, about chronic illness and shit. I haven't gotten a diagnosis for anything yet, so I'm left to search for myself. I wonder if I might have fibromyalgia, Juvenile Arthritis or Pots. But recently, one of my friends caught COVID and it turned into long COVID. He has similar symptoms to me but not exactly the same. It's just making me theorise if potentially I have Long COVID, or if I had long COVID and it triggered the existence of something else.

The only thing is, I know that no medical professionals seem to take me seriously. Coming back to my point on my friend, In school, he has a newly adjusted timetable that allows him to only do half days, instead of a full six hours. I'm not sure if he is professionally diagnosed with Long COVID or not, but I really wish I was also able to have half days as sometimes, I just cannot go through with my day due to the pain I'm in or the fatigue I have. But I'm not diagnosed, which means I either have to have my parents backing me (and they are but they wouldn't back me so much as to allow me accomodations within school unless I'm diagnosed) ot get diagnosed which takes God knows how long. I don't want to seem like a lazy bitch because I literally don't even appear to be in pain to almost everyone, I mask it very well and I feel as though if i do try to get benefits in school without a diagnosis, i will be seen as a faker or just trying to skip school.

Luckily, my 8 week period of the exercises is nearly done, so I'll be able to tell my physio that it hasn't helped and has actually made me feel a bit worse and hopefully then I'll be closer to a diagnosis

#chronic pain #chronic illness #disabled #confused #fibromyalgia #cpunk #spoonie #long covid #rheumatoid arthritis #medical gaslighting #medipunk #medical trauma #health #disability #accomodations #pissed off #tw vent #tw rant #rant post #personal rant #ranting #complaining #venting #too many tags #queer