pleastrop

☆ bpd, social anxiety, autistic, dysautonomia, hEDS ☆ she/her ☆ 21

[i-say-stupid-things]

i’m gonna hold your hand with a glove on when i say this

when disabled/chronically ill people tell you they can’t do something, then that is not your cue to tell them that they can actually or that they’ll always find an excuse if they’re looking for one.

when a disabled/chronically ill person says they can’t do something, sometimes that doesn’t mean it’s outside the realm of possibility, sometimes it means if they (attempted to) do that, they will seriously hurt themselves.

when a disabled/chronically ill person says they can’t do something, sometimes it’s preventative care, and they refuse to do that thing to prevent a flare up from happening/their symptoms getting worse in the first place.

disabled/chronically ill people are not “looking for excuses”, they are giving you reasons why. something they don’t even have to do! so maybe just accept the reasons they give you.

[my-random--thoughts-deactivated]

[pleastrop]

im in so much pain i wish i could hide from myself and cry

[tooies]

can they change the temperature outside to something else

[pleastrop]

just finished my tilt table test. the doctor was actually surprised because all the positives he had lasted between 15-20 minutes before fainting and i lasted 1 minute and 30 seconds. i feel awful.

but anyways I FINALLY, AFTER YEARS, HAVE MY OFFICIAL POTS DIAGNOSIS!!!

[pleastrop]

i travelled for more than 2 hours, on an empty stomach and being really hot outside, to have my tilt table test, when i got to the hospital they told me they couldn't do it because i had to make three appointments instead of only one cause the test is long, they didn't tell me beforehand and it was THEM who gave me the appointment. im going to scream.

[pleastrop]

if everything goes okay im having my tilt test in a few hours!!! im so anxious omg

[pleastrop]

it kills me a little every time i randomly remember i'll have to live feeling like this for the rest of my life

[pleastrop]

i had to stand up on the bus for like half an hour, when i tell you my feet where POUNDING from the blood pooling. felt like fucking spongebob.

[pleastrop]

atp going to med school and learning every single speciality to give myself an official diagnosis would be faster than waiting for doctors to listen to me and do that

[pleastrop]

i was talking with my therapist and i got SO mad because we started having a conversation like "and what can you do to not faint?" "NOTHING, I can't help it", "ok but if you faint while you're out you can just say that and after the episode happens you just follow with your day" "no i can't because it disables me for the rest of the day", "but if you eat salt you won't faint" "that's NOT how it works", "you can't not go out because of it" "YES i can, it's a disability", "so what, you're going to stay inside all the time? "actually YES that's what im going to do because there's days where i can't even stand and work places/uni don't even try to make accommodations", "and what are you going to do to cure yourself?" "ITS A CHRONIC ILLNESS" i had to change the subject because i was actually fuming like how can you be SO dense?? especially after i explained it to you SO many times, over and over?? you're a therapist like GET A GRIP

[foggytyphoonangel-deactivated20]

Time for a new fucking therapist, if possible. Fuck that shit.

[alloftimeandspaceisours]

I second this. Being disabled isn't the only aspect of our lives, but it affects basically if not every other aspect of it and her not getting it is a dealbreaker for me (IDK your situation, so you might not have many options, but you deserve better). Even more so when you've repeatedly explained it to her and she isn't even trying to understand it. And seriously, how are you going to cure yourself of a disability that has no cure?? What the fuck?? It's just angering you (understandably so) and to keep working with her sounds counterproductive to me. I hope you can find a better therapist, one who understands disabilities.

[pleastrop]

i wish i could like comments on here because sometimes i dont know what to answer but i dont want it to look like im ignoring the person

[pleastrop]

i travelled for more than 2 hours, on an empty stomach and being really hot outside, to have my tilt table test, when i got to the hospital they told me they couldn't do it because i had to make three appointments instead of only one cause the test is long, they didn't tell me beforehand and it was THEM who gave me the appointment. im going to scream.

[pleastrop]

how do yall explain to people/doctors why you need a diagnosis?

because i feel like everytime i explain it they still think i want it just for the title (you know, the way some people say they have adhd because they think its quirky and cute) so i feel like maybe i'm not using the correct argument or words idk i need new points

[fukurouonthesea]

I once said "I need a name, a reason, something to explain my daily experiences that are very much disabling. A name means this being real to me and you and everyone else in this health system, it means being able to access aids and medication, it means maybe even finding a treatment that will help. And also it's just scary to feel very much not okay and only ever getting told but your labs are normal, I don't know, I don't think it's real, technically you should be fine. Please understand I don't want any of these conditions, I don't want to be sick. But the fact is, I am sick anyway, I feel that, I feel the effects of these symptoms on my life and my health. The difference is whether I have even a chance for that to be medically recognized or treated or not."

[a-sassy-bench]

breaking news disabled people aren't using their disabilities as an excuse because it turns out it isn't an excuse it's a state of fucking existence

and existence is everywhere all the time no matter what even if you wish it wasn't

.

[pleastrop]

i was talking with my therapist and i got SO mad because we started having a conversation like "and what can you do to not faint?" "NOTHING, I can't help it", "ok but if you faint while you're out you can just say that and after the episode happens you just follow with your day" "no i can't because it disables me for the rest of the day", "but if you eat salt you won't faint" "that's NOT how it works", "you can't not go out because of it" "YES i can, it's a disability", "so what, you're going to stay inside all the time? "actually YES that's what im going to do because there's days where i can't even stand and work places/uni don't even try to make accommodations", "and what are you going to do to cure yourself?" "ITS A CHRONIC ILLNESS" i had to change the subject because i was actually fuming like how can you be SO dense?? especially after i explained it to you SO many times, over and over?? you're a therapist like GET A GRIP

[pleastrop]

how do yall explain to people/doctors why you need a diagnosis?

because i feel like everytime i explain it they still think i want it just for the title (you know, the way some people say they have adhd because they think its quirky and cute) so i feel like maybe i'm not using the correct argument or words idk i need new points

[pleastrop]

the doctor sent me to do a tilt table test and im really anxious because what if for some reason its negative (because he told there are A LOT of false negatives) and they refuse, yet again, to give me the official diagnosis? so i did a poor man tilt test and, guess what, i had to lay down 3min and 7secs after standing because i almost couldn't even see or hear anymore. yeah, i don't think i should be that worried