I Am So Sorry. The Being Labeled “non Compliant,” I Understand That So Much. They Dont See Us Fighting

i am so sorry. the being labeled “non compliant,” i understand that so much. they dont see us fighting for our health every day. they only see us for a short appointment or hospital stay and think they can judge us based on that.

im so very glad you have that nurse. 💕

“consistency is key” doesn’t apply to many disabled people.

going to the doctor and having them tell me that, and that i need to stick to a schedule they have deemed appropriate is completely comedic.

what about the fact that my health and ability to do anything is a constant gamble? it can change drastically and almost instantly at any given time.

what about how right now i can stand up and make myself breakfast, but by lunch time? who knows. i may be unable to even sit up.

how do u listen to me explain that i dont have a daily or weekly schedule because of how unpredictable my health is, and reply by giving me a schedule.

do you not think i have tried to stick to a routine and schedule like all the healthy people around me??

all i see is people with consistency. i grew up thinking i was broken because i couldnt. i have pushed myself to breaking points trying to fit your mould of success and health.

im sorry if you experience this too. im going to make another post about what consistency can look like for me and other disabled people. because while we dont fit the classic definition of it, there are ways we can make our own version. i wish doctors would listen to me and would help me find my version instead of insisting on theirs, but they havent, so i wanna try help others find theirs. prt. 2 here (now going to make multiple more posts on this topic lol)

More Posts from Zylahbee and Others

2 months ago

THIS

If you're a disabled young person, you've most likely been hit with the "pfft you think you're in pain now? Just wait til you're my age" bullshit from older people at least once. Everyone talks about how invalidating it is

But I haven't seen anybody mention how it's terrifying, too. Yes, I know health deteriorates with age. I know that old age is a disability unto itself. I know that the healthiest person alive will start getting aches and pains past the age of 40 and may even need mobility aids

I know all this stuff. And it always makes me think "yeah, if I can't walk without joint pain even while using mobility aids AT AGE 21, how painful will life be for me at the age where it gets painful for everyone?"

And it's hard not to feel like I'm doomed, y'know? Where most people get a period of health that they wish they appreciated more when they start to lose it, my starting point was a body that doesn't work properly and it's only gonna get worse from there. It's worse every fucking year.

TLDR stop telling disabled young people that their pain will only get worse to the point of being unimaginable as they age, WE FUCKING KNOW


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4 months ago

you guys made luigi mangione trend for days and I need to see the same energy for brianna boston. she is a 43 year old mother of three who ended a phone call with blue cross blue shield (after being denied a claim) “delay deny depose, you people are next” and is now being held under a 100,000$ bond and could face FIFTEEN years of prison if charged. she has no weapons, her record is clean, and yet she is being held behind bars. they are afraid of the public and are trying to subdue. do not let them!!!! be outraged that our freedom of speech is being threatened!!!!! deny defend depose! free brianna boston!

4 months ago

ive come up with a 3rd webcomic idea fhjdj

i have not started any of them.

well they have characters and a rough storyline but.. thats it.

anyways maybe ill actually start one for real this year.


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5 months ago

its really confusing when youve had a traumatic childhood, but your adult life has been really traumatic too.

because on the one hand i have so much nostalgia for my childhood and i long for it, but on the other hand it really wasnt that great.. i just had less responsibility for my health.

i feel like im constantly searching for when i felt safe, but im not even sure if there was really a time where i truely felt safe.

i think thats why i love engaging with media from my childhood so much, its what helped me escape as a kid and im still running after that feeling.


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3 weeks ago

its devastating, seeing the life ive longed for happen to others while im stuck in bed in a flare up… again.. its so hard.

i unfollow a lot of people for this honestly, if i havent seen them in the past few years then i dont see the point in seeing a bunch of posts that make me feel bad, its sad.

Being chronically ill in your 20s is stupid you have to see your peers like “started a family🥰” “got married😍” “bought a house😇” “scored a promotion😋” meanwhile you’re fighting for your life to take a shower


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4 months ago

ive been avoiding my shower for months (been using literally any other shower) but i finally used it today and i didnt even cry so i think 2025 is going pretty good so far fingers crossed everybody manifest tysm


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2 months ago
Bloom Redesign 💙

Bloom redesign 💙

3 months ago

i have so much art i need to get out of my brain its all stuck in there while i cant do any 😭😭😭😭😭


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3 weeks ago

Something that really bothers me about disability activism and representation is how people with gastrointestinal illnesses or disabilities continue to get the short end of the stick and that nobody ever talks about it because it’s “taboo”, which it absolutely shouldn’t be. We can’t be open with people IRL, even in disability spaces, about our conditions because they’ll either view us as disgusting or triggering or they’ll view us as sex objects because of their fetishes. We don’t fare much better in fiction, with GI disability rep being largely allocated to either grossout humor, the author’s barely disguised fetish, or just actual pornography about our conditions.

It sucks because I have a lot of health issues, and I can talk about my chronic pain or my stigmatized mental health conditions with no fear of being shamed, but it feels like w/ my GI issues I’m keeping a dirty secret because that’s how people - including other disabled people - treat these kinds of conditions. People like me shouldn’t be made to feel like we’re outsiders in our own spaces.

(Note 1: This post is not meant to kinkshame. I bring that topic up because unfortunately it IS some of the only rep we get, and we deserve representation that talks about our disability as a disability and not something sexually arousing)

(Note 2: Other disabilities/illnesses are treated this way too. This is just the one I have experience with.)


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