I envy people who can do body positivity ngl
Why I can't isn't even about my body type either. I don't really care what weight I am, if my body is the "right" shape or if I have curves where I'm "supposed to" or not, or if my body is attractive to others. Honestly with that stuff, I'm actually pretty at peace with the body I have, and even if my body type does change later on I still would be. So I can understand people who are body positive when it comes to different body types and sizes.
But I don't feel I'll ever really get body positivity and people loving their bodies because of me being disabled. I can be happy with my body type, but I don't understand how I could ever be really happy with a body in near constant pain. With a body that collapses when I get too overwhelmed. With a body that it's physically exhausting to just be in all the time. I don't hate my body, but it sure as hell makes it hard to love it either when it hurts me, when it doesn't work like it's supposed to. The closest I think I'll ever get about my body is neutrality. I don't hate it, and there's parts I do like. But I can't love it either, because of the pain it has put me through.
I dont know who needs to hear this
But I sure did:
You can and absolutely should modify the chore/self care task if it makes life easier. Sit on the floor while doing laundry. Clean dishes while in a chair. Sit in the shower.
Save your spoons. Accommodate your fatigue rather than fighting it.
I was one of the first Americans to get COVID in February 2020 as a teenager. Here’s how I’m doing now (it’s not good). Please continue your COVID safety protocols.
[Posted July 10, 2022]
[ID under the cut]
1: A black and white comic. A cartoony boy, Joey, is wearing a birthday hat, looks sad, and holds a cake that says “2 + years” on it. Text reads: “I’m 21 years old and 2 years + 5 months post-covid. I have not improved.”
2: A drawing of Joey, masked, walking past a food truck. The truck emits a stink wave with skulls and crossbones within it. Text reads: “My worst symptom is still parosmia. COVID destroyed and rewired my smell nerves so everything smells and tastes like rotting meat and old sewage. It’s been 2 years and this doesn’t get any easier.”
3: Drawing of Joey clutching his stomach and opening a door. Text reads: “Everything I eat makes me really, really sick. Everything. I regularly spend 3 hours a day in the bathroom.”
4: Drawing of Joey laying down on a pillow. Text reads: “I finally got diagnosed with post-viral chronic fatigue syndrome. I get really dizzy when I walk, and my head feels like it’s filled with cotton. I fall asleep early every night and can hardly wake up in the morning. I’m barely functioning.”
5: Joey looks down at a smartphone. Text reads: “Here’s a look into trying to plan a masked, distanced, outdoor meetup with friends.” A large smartphone shows the text conversation: “Noon?” “Sorry — I get really sick around then. :(“ “How about 4:00? We can do dinner later.” “Sorry, I don’t think I’ll be able to eat anything.” “Ok, hmmm… how about 7:00 after dinner?” “That’s too late for me. I’ll be too fatigued.”
Joey looks, upset, at the camera. He’s in a chair gesturing to his laptop. Text reads: “I’ve also lost many friends. Most people think I’m a bummer who is taking COVID too seriously (I’m not).” Internet post reads: “ughhhh this guy is SO annoying and makes everyone feel bad about themselves!!! just stop being my friend UGH!” An arrow points to the message that says: “this happened.”
A doctor, a tall man with short hair and a surgical mask, talks to Joey. Joey sits in a N95 mask and looks worried. Text reads: “I’ve seen a bajillion doctors with no success. Most of them treat me pretty poorly. I’m American, so this has cost me several thousand dollars.” A conversation between Joey and the doctor reads: Doctor: “I prescribe smell therapy!” Joey: “I’ve been doing smell therapy for two years already.” Doctor: “lol right. Anyways, this is $590.” A disclaimer at the bottom of the drawing says: “If you’re seeking treatment in the Philadelphia area, DM me for a warning against this hospital.”
Joey gestures to a block of text. Text reads: “Here is a list of everything I’ve tried (nothing has made me feel any better): Many blood tests, stool samples, dental surgery, 2 nasal endoscopies, an MRI, a colonoscopy, an endoscopy, anti-seizing medication, nasal steroids, smell therapy, beta blockers (heart meds), and a million doctor’s appointments. I was supposed to get a stellate ganglion block to reset my nervous system, but the hospital cancelled it on the morning of. Same hospital as earlier. Philadelphians beware.”
Joey looks sadly out the window while a group of people passes by on the sidewalk outside. Text reads: “I mostly just feel alone. I’m still isolating for my life and for others’. I’m constantly bombarded with people who don’t care about my life.”
Joey sits sadly with his head in his hands. Text reads: “COVID isn’t over. We’re in a surge right now (summer 2020), but I often feel like the only American still following proper safety protocol. As much as you want COVID to be over, I want it tenfold. But it’ll probably never be over for me. At 19, COVID destroyed my body and much of my future. Please care about other people."
sending love out tonight to everyone who is progressively losing their abilities, whether that's movement, ability to walk, eyesight, or hearing.
it's hard to come to terms with the fact that you can't do things that you used to be able to do. I'll be honest, it feels like you're losing control of your life. it can feel very isolating and hopeless. its scary and overwhelming, and it's so hard to deal with.
you are not less than just because you can do less. im proud of you for still being here, and i wish you ease with adjusting to new ways of life. please take care of yourself, i love you.
It's weird that people just like... Forget you're disabled.
You'll be like "yeah I've got chronic fatigue and chronic pain" and then you tell them how it impacts your life and then they just... Keep expecting you to do able bodied things.
Like I can't always clean up my hair from the shower without taking a break first because showering is a very physically demanding task. But if I ever say I don't have the energy to do that. They call me ridiculous. They say that's unreasonable.
It's just kind of bizarre.
It's only when you remind them that you're disabled that they back down. Because they forgot. They forgot you couldn't do everything they do.
Here’s my stance on accommodations for disability/illness:
I don’t want to be normal. I want to be functional or semi-functional. I want to be able to do the things I enjoy, and I don’t have to look or do it the same way as everyone else while doing it.