YES YES YES. It Is Incredibly Hard To Understand Our Own Bodies And Feelings.

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)

More Posts from Zylahbee and Others

4 months ago

hello to my physically disabled friends. if you, like myself, spend a lot of time in bed and stick to one particular spot it might be worthwhile to see if your mattress needs rotating. i got mine shifted and it became immediately obvious that it had developed an indent and wasn't supporting me well. i could feel the difference immediately after lying down

4 months ago

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.


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5 months ago

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.

3 months ago
🌊 Aisha, Fairy Of Waves!! ✨

🌊 aisha, fairy of waves!! ✨

one day i'll draw their wings...not today though LOL i love love love literally all of aisha's transformations but believix as a whole has a really special place in my heart 💕 which winx should i do next?? :0

2 months ago

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.

4 months ago

bathrooms should be accessible for all.

zylahbee - zylahbee

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3 months ago
Looking More Like A Checklist These Days. I Want Off This Ride. 😭

Looking more like a checklist these days. I want off this ride. 😭

4 months ago

cries its so beautiful

zylahbee - zylahbee
4 months ago

i find it interesting the overlap of c-ptsd symptoms with autistic traits.

i get asked all the time if im autistic. i even started questioning it myself just from how often this happened to me.

but while yes i have a lot of symptoms that are a part of many autistic peoples experiences, i wasnt always this way. i developed these symptoms throughout my childhood as i went through more and more trauma.

i remember when i wasnt sensitive to noise, light, etc. i remember when my social abilities were practically the same as my neurotypical peers. i remember when i never needed to carry stim toys everywhere i went. just to name a few.

anyways, i have so much in common with my autistic friends. while we arent the same, we get each other on a level that i havent found with many neurotypicals. ive also found that i often gravitate towards autistic people without meaning to.

i think its nice that we can find community where we didnt really expect it.


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zylahbee - zylahbee
zylahbee

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