They Did What 🧍🏼‍♀️

YES YES YES. it is incredibly hard to understand our own bodies and feelings.

this is why we need doctors to really educate themselves by taking the time to listen to us and learn from us. a standard medical textbook isnt going to explain the medically complex to you, only working with medically complex people themselves can.

“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)

marfan syndrome :)

okay! on the research list! 🩷

im desperate to paint but im away and didn’t bring anyyy

Classical Ehlers-Danlos syndrome, pancreatic insufficienty, hemiplegic migraines

thanks for the suggestions ill add them to the research list!!

i had the same experience when i had to use the elevators.

alright lets get this out of the way.

school bathrooms should be unlocked during school ALWAYS

school children should be allowed to go to the bathroom ALWAYS

school children should NEVER have to ask to go to the bathroom, just tell the teacher that they need to go

schools should NEVER question a child on why they need the bathroom

schools should NEVER make jokes about how often a child uses the bathroom

schools should NEVER get angry at children for using the bathroom

NEVER should a teacher approach a child about their bathroom usage.

if there is a concern or problem with a childs use of the bathrooms, the school should speak to their parent or have a meeting involving the parents and the principle.

if there is misuse of the bathrooms, the school should speak to their parent or have a meeting involving the parents and the principle.

you never know what children could be dealing with, whether they have bladder issues, gi issues, mental health issues or other disabilities. some children may be using the bathroom to hide from bullies, or they may have addiction issues.

it doesnt matter. its shouldnt be the teachers job to police toilet usage. only when there is an issue should limits or supervision be put in place, AFTER meeting with their parents and potentially the student to figure out the reasons for such issues.

i know this is really controversial but im really sick of horror stories from kids like me who dealt with the shit that is school bathrooms

maddening that the media refuses to call nazi salutes what they are. HOW ARE WE HERE RIGHT NOW. fucks sake.

on day 5 of a migraine get me out of here

I hate that there's no way to be disabled that people will accept.

If you show joy, or acceptance in your disability, you're not really disabled and no one will take you seriously when you do complain and well it can't be that bad and oh I'm sure you're used to it.

But if you're miserable then you're whiny and annoying and people hate that it's "all you talk about" and its always ugh you're always tired and can we please stop talking about this it's making me depressed and oh I'd kill myself if that happen to me.

If you're happy you have everything figured out and don't need help anyway but if you're miserable you're a whiny bitch that can't just suck it up. There's no winning

“i asked chatgpt-” ohhh ok so nothing you are about to say matters at all