#spoonie struggles

[plague-of-insomnia]

you know you have a disability that affects your ability to eat when you manage to finish half a hamburger and feel like you just climbed mount everest

[hussyknee]

my disabled ass, after (1)good day: "obviously I am cured. in fact it may have all been in my head. who can say? now to rejoin society!"

me, the next day: "it has come to my attention that i may be chronically ill."

[mami-chaos]

Normalise mourning the life you may have had before chronic illness took over.

[tucknroll]

when i say “life is such a pain,” i don’t mean it in a nondisabled ‘something unfortunate’ happened way but in i am disabled and i am in so much pain.

[plague-of-insomnia]

I hope every one of you appreciates that if you need a doctor you can just find one.

Maybe it’ll take a little time to find one you like or who’s in a convenient location… but you’ll find one.

None of you understand what it’s like to have a treatment for your disease that works but is unattainable bc you can’t find a doctor who will fucking treat you to get it.

You can’t understand what it’s like to live in one of the most populous cities in the world. with an enormous flourishing medical center, and not be able to find ONE single doctor to manage your care.

To live in a state with a population of of 30 million and only have ONE doctor who would even consider treating me in the entire state.

To spend almost a year pursuing different possible doctors only for each one to turn around and say “sorry, no”

You will never, ever have to spend months and months and months hoping and praying to find someone, anyone who will manage your care only to come up empty again and again.

So be grateful.

[rhiandoesfandom]

Having a disability is SO FUN guys. Did you know that everyone around you (except my loving husband) will constantly tell you to go back to work and just "push through the pain", even though you literally can't stand for more than five minutes or focus or have to take a nap every four hours?

Did you know that every time you use a mobility aid, they'll ask if you REALLY need it? (which is why I've been using it since June but not around my mom til now :) )

Did you know that just to get paid from the disability that YOU PAY FOR while you were working, you'll have to fill out like 12 different papers and have your doctor fill out the same papers like five times to "prove" that you're disabled, and if you happened to be seeing them for anything related to your current condition, they could deny you anyway? Isn't that just awesome?

Doesn't all of this sound SO ABSOLUTELY AMAZING AND FUN????!

[hellyeahsickaf]

Me, coughing up blood and taking my last breaths: I don't need help I'm fine i got it I probably just need a nap

[plague-of-insomnia]

My body is like “ha! Gonna make you guesssssss~~~~”

[thecreepycrawlersss]

us, in a flair-up: ow ow bones ow oh gods oh ow yeowch

samuel: damn. i might switch out cuz uhh,,, i dont wanna deal w/ this lol

malachite: well IM not switching in, i already had to deal with the start of the flair-up !!

everyone: *silence, nobody is offering to front*

fern:

fern: let me front...

samuel: child no-

fern: LET ME OUT !!! LET ME OUTTTT !!!!

malachite: dude there is no way you'll be able to deal with the pain

samuel: yeah, we can barely deal with it

fern: IM NOT A WUSS I CAN DEAL

everyone: *bombastic side eye*

fern: stop looking at me like that...

everyone: *more silence...*

steven: *slowly raises her hand* i can front...?

samuel: ITS THE SAME PROBLEM WITH YOU

[atalana]

trying to hold on to some semblance of a career while having a chronic illness like

[serenityquest]

[plague-of-insomnia]

Listen, my doc yesterday couldn’t get me my medicine bc of complicated reasons (insurance might deny bc she’s a gp for example) but she kept saying HOW CAN I HELP YOU, WHAT CAN I DO TO HELP?

And legit I almost broke down into tears, bc that seems like such an obvious thing for a doc to ask and yet I have never been asked that before in 20 years of being sick and disabled. (For context, I was seeing her after my two main specialists hung me out to dry with absolutely no continuity of care and extreme callousness.)

So yeah, I can definitely buy into the fantasy of a doc who’s willing to do anything to help you.

[thedisablednaturalist]

It's so fucked up that every time you mention even being just "chronically ill" either IRL or online, people come from out of fucking nowhere on their high horse to lecture you, without even knowing what illness you have!

[chroniclesofchronicillness]

Isn’t this just everyday?

[plague-of-insomnia]

@gabedemon

Still not over the head of cardiology, who said she wouldn't formally diagnose me with dysautonomia because she didn't want me to think of myself as disabled.

As if good vibes and a can-do attitude can stabalize autonomic dysfunction.

[stars-and-branches]

Fibromyalgia should be renamed the Disorder Of Pissing Me Off