Hurts if I eat, hurts if I don't; hurts if I sleep, hurts so deep.

sometimes i wonder if i’ll ever come to terms with being disabled. i guess i’m still holding out hope that i can get better, at least for now. but it’s hard when you’re literally just standing there, holding a camera, and your hands are shaking and your head is swimming and you feel like if you don’t sit down right now you’re going to die. it’s really hard when i eat a regular meal and have weird coughing fits after that always bring me to the verge of throwing up. it’s so fucking hard when you’re just sitting down and you’re out of breath and you have a migraine from moving around just a little too much. and it’s so fucking frustrating because it wasn’t always like this. it’s only been a year since i’ve shown symptoms of dysautonomia and it’s been two since i got my worst case of covid. i’m so fucking sick of living like this. i want to go back.

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

When the chronic fatigue is chronic

stop villanizing disabled people. stop assuming we're just being lazy. stop assuming we could be trying harder. stop assuming that we'll "feel better" in a few weeks. stop assuming that we have the same energy levels as everyone else. thanks for coming to my ted talk.

“surely this will not cause my chronic illness to flare up,” i say, actively doing something that has never failed to flare my chronic illness

Needed my own reminder for my stubborn ass.

my mom keeps trying to get me to go to the ER when im having a flare up and i have no idea what to tell her.

because ive BEEN to the ER before. you wanna know what they did? while i was sweating, shaking, and sobbing, curled in a ball of pain?

they asked me if i was on my period. when i told them no, they asked me if i was pregnant.

when i told them no, because i wasn't sexually active, they forcibly tested me anyways, and then when it came back negative said, "well maybe you should just take a few deep breaths", gave me liquid ibuprofen, and sent me home.

disabled people, in this particular situation disabled afabs, are never fucking listened to.

the ER staff literally LAUGHED at me multiple times. they pointed at me when i was having one of the worst episodes of my life and snickered.

so no, i do not want to go to the fucking ER. my heating pad, ice packs, and nausea meds are going to help me more than anything a hospital could do.

able bodied people, ask yourselves this:

is your disability allyship conditional, or convenient?

will you be willing to not use fancy fonts or symbols if someone with a screenreader asks you not to online?

will you judge someone with an autoimmune disorder for having skin infections you deem gross or unsanitary?

when a deaf person speaks differently than a hearing person, will you still take them seriously?

when a nonverbal person needs an AAC or text to speech device, will you still include them in your conversations?

when your mobility aid using friend needs help in an inaccessible area, will you wait up for them, or help them if they ask?

when someone with tourette's is having trouble getting their point across because of tics, will you be patient and listen?

when someone with a stutter is having a conversation with you, will you take them seriously?

will you listen when someone with an invisible disability needs the big stall, or the accessible seat on a bus?

When your college with POTS needs to snack on salty foods, will you find them annoying?

when a person with hyper-mobility stretches and their arms bend out, will you stare?

Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.

They exist to put us on a level playing ground to everyone else, and nothing more.

destigmatize having a body/body parts that look “gross”

destigmatize having a reoccurring rash that you can’t control

destigmatize “strange looking” veins

destigmatize “gross” scarring

destigmatize having bodies that are broken and express that

destigmatize being disabled and having “atypical” physical manifestations of said disability

disabled bodies are beautiful

DONT take a persons medical device

I shouldn’t have to say that but here we are

One of the managers at work likes to take and hide peoples stuff as a joke. My manager took my pulse ox when I wasn’t looking. When I noticed it was gone I started to panic. A pulse ox is minimum $30 and I’ve had mine for over 7 years and have named it. So yeah I was panicking. I immediately paged my manager to my register and when he arrived I demanded it back. He did give it back.

I informed him that it was stupid and dangerous of him to take a medical device from someone especially like that.

So again

DONT TAKE A PERSONS MEDICAL DEVICE

Irritates the hell out of me when people respond to a post or comment like, "everyone does this, it's not just [disorder/illness/neurotype], it's called being a person."

Yeah and everyone coughs once in a while but it doesn't mean someone with pneumonia doesn't cough?? It doesn't mean pneumonia doesn't cause coughing??

Everyone gets dizzy once in a while but it doesn't mean vertigo doesn't exist??

Just about every symptom or group-common trait is going to be experienced by people who don't belong to those groups or have that disorder. It's about the frequency and intensity with which that symptom or trait comes up.

Useful information

Did you grow up as a disabled person and think "man, I am shit at being a human being. How does everyone do it?" and then think you were just lazy or less motivated and start believeing everyones comments about how you have no motivation and are genuinely just lazy and then you still wonder why you're not good enough no matter how hard you try and then you get old enough to realize that not everyone experiences the same thing you do and you were just given a short straw or are you normal?

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.