"If Tampons Should Be Free, Then So Should My Diabetes Meds."

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)

im seeing sooo much misdirected anger and blame in all kinds of communities and im just rahhh its so sad and frustrating because i just want to scream that theyre angry at the wrong people

people dont understand the boredom of being disabled.

i see a lot of people suggest to people to embrace boredom and creativity will come from it. that to improve your attention span and get your life back from the trap that is quick form media you need to be bored more.

but i dont think that is the case for many disabled people.

its not the case for me.

i am SO bored. EVERY day. i cannot do all the things i want to engage in. i cannot play games i cannot read i cannot do art i cannot bake. these things arent being stopped by a social media addiction, they are being stopped by my health.

and my attention span isnt struggling for the same reasons as many abled people. mine struggles because of my symptoms. my fatigue, my pain, they are distracting and fog my brain.

so disabled people, when youre looking for tips about how to improve your attention span, and engage in your hobbies more, keep in mind that the reason for your struggles may be completely different to the people who are sharing suggestions and tips on the topic.

discovering the trend of “dopamine” dressing/decorating was so hilarious to me…

whats the point of doing life any other way??? are people really wearing clothes that dont make them happy?? and decorating their house in a way that doesnt brighten their day?? 😭😭

i was so confused like have i completely misunderstood society. no wonder people call me eccentric and weird.

i just assumed the things that make me happy were different to what makes others happy, not that they just.. were completely not having that as their goal in the first place.

pls surround yourself with things that make life sparkle guys i beg of u its the best way to live

anyway be normal about people with renal or gastrointestinal disabilities and conditions. your personal hang ups about anyone's disability are worthless. leave them far away from disabled people.

UHC website has an article entitled "Response to Misinformation" in which it explicitly labels Luigi as a killer despite a trial not taking place. Which in itself is defamation and very telling of their concerns with pushing a narrative more than a legal and ethical perspective.

hot take apparently but just because youre disabled doesnt mean you arent ableist. being disabled doesnt erase your internalized (or externalized) ableism.

if youre paralyzed and you think ambulatory wheelchair users are 'less deserving' of a wheelchair, thats ableism.

if you have adhd and you make fun of autistic people, thats ableism.

if you have dyslexia and think dyscalculia and dyspraxia arent "real problems," thats ableism.

if you have any disability and think ableists should be 'punished' for their ableism by becoming disabled themselves. believe it or not that is in fact ableism, because it perpetuates the idea that disability is something shameful or something that only happens to bad people

its truely depressing to think about. nobody should be mistreated and to know and think that its happening constantly feels so hopeless.

it hurts hearing other disabled people talk about medical mistreatment.

like i am partly grateful to not be alone of course, but i really wish it wasnt a common or even standard occurrence.

breaks my heart.

nailed it.

anyone who thinks health issues end with walking out of the hospital doors, massive reality check for ya. there is no clocking out of chronic illness or disability.

surgery does not cure everything, medication does not cure everything. hospital cannot cure everything.

the amount of people in my life who believe that when i go to hospital, i will be discharged cured or symptom free is astonishing to me.

most of these people have known me long enough to have seen me through multiple hospital admissions and every time they come back to this way of thinking even though its never happened.