UHC Website Has An Article Entitled "Response To Misinformation" In Which It Explicitly Labels Luigi

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.

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

“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)

tysm fatigue

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???

It has been long enough that responding without preamble would now be Weird

never speak again.

i hate how people don’t understand the difference between having no motivation, and having the motivation but being physically UNABLE to do it.

trust me when i say i wish i was not ill and could just “go get a job.”

getting the cancer response is particularly funny for me.

i had cancer. thats what made me chronically ill.

telling people that seems to blow their minds.

theyre like no but cancer is the worst and you dont have that now but you had it before so youve had both cancer and being chronically ill but like cancer is worse and-

they dont know what to do with that. they tried to make a smart comment and it failed miserably. its funny to me. (i have to laugh or ill cry)

Telling a chronically ill person "at least its not cancer"

Or someone who's disabled due to a tragic accident "it could've been worse it could've disabled you more"

Or anything along the lines of "you could be dead or more disabled be greatful" I hope you rot in a hole where everyone you ever loved forgets you ever existed and you have to sit with that like in coco where you disappear when you're forgotten because that is so insanely rude and even more disgusting and if you don't know how to talk about disabilities without trying to "look on the bright side" or try and cheer people up about it maybe you shouldn't talk about them because some disabilities just are and they're always going to be and there's nothing anyone can do about it

And if someone is dying from their condition but its taking years instead of being fast like tv and stuff portrays it pls for the love of God don't tell them they "aren't dying fast enough" or "weren't you dying last year"

This post is specifically in reference to all the horrible comments able bodied people leave on disabled ppls social media's where the person shares their experiences

I know I'm shouting into the void with this one but like. Genuinely so many low support needs people dont understand what it's like having even medium support needs. Like I am entirely dependent on other people for many of my needs. I can not see a doctor without someone else scheduling the appointment, taking me there and doing a large amount of the communication for me.

If my caretaker had not been accepting of me being trans and invested hundreds of hours into psych appointments and taking me to my endocrinologist and doing all the paperwork involved with my name change and literally taking a week off work to stay with me in the hospital for surgery etc i would have just like. Never transitioned. My ability to transition was entirely dependent on a singular person and that's what a lot of other parts of my life are like as well. and that's fucking terrifying and a great way to be neglected and abused in ways that are horribly hard to get away from.

I dont drive, I dont work, I struggle to leave the house at all, I dont fucking communicate with people majority of the time. The things that are hard for you? I probably can not do them to begin with. No one in my family lives even close to a comparable life to me. None of my irl friends do. I'm incredibly isolated.

And then I go online and see people rant about how easy MSN and HSN people have it because we just get everything we need and how because people can tell we are disabled everything is so easy because none of you even manage to listen to us talk about the neglect and abuse and trauma we face/d. I see people angry at their (more) disabled siblings for getting care they need to survive instead of mad at society for creating a system where its incredibly hard for families to take care of both a higher support needs child and another child.

And I see people who live completely independent lives who work and drive and make their own doctors appointments and grocery shop and travel by themselves call themselves MSN (I could go on a rant about how that's also often the fault of LSN influencers for not leaving a lot of room in their own community for legitimate struggle but that's for another day).

I just want my needs met. I want to be able to decide where I live. I want choice in my care. I want to be able to have community with those like me. I want others to realize I exist and leave the words i have to describe my existence alone. I want others to listen to what I have to say about what my life is like.

okay it got better for sureeee!!

its a bit of a slow start for me personally, but i thoroughly enjoyed the 2/3 and then the 3/3 even more!

im not sure if i will get the sequel or not, ill read a few more books and see if im still thinking about emily wilde after that.

spoilers below

wendell and emily’s dynamic is hilarious after the proposal. they are so direct with each other normally, but when it comes to romance they just avoid actually speaking of it as such.

i really enjoyed how the town accepted emily’s way of being, that she is not good with attention or small talk or pleasantries. they didnt demand any kind of thanks from her, they knew she was thankful without it.

3.5/5 ⭐️

im reading emily wilde’s encyclopaedia of faeries right now and im not sure how i feel about it.

like i like it dont get me wrong. i eat anything up that has fairies of any kind.

but im a very.. emotional person, and so the format of the book being emily’s diary, and her being quite a.. professional and almost stoic? person, doesnt quite engage me as much.

maybe she taps into her emotions later in the story (i’m about a 1/3 of the way through) so idk!! thats just my thoughts so far

People: the normal amount of pain is zero

Me, chronically ill: sounds sketchy but okay