crohnsdiseased - Tumblr blog

[crohnsdiseased]

I know that at some point a lot of people were joking about IBS and being incontinent and I won't pretend like I didn't find a lot of those jokes funny or anything, but I feel that people should have more respect and compassion for people that are incontinent and have bowel and or bladder issues and whatnot. These people are physically disabled in some way or another and deal with being embarrassed in real life over things that they can't control when they shouldn't, and people should probably be sympathizing with them instead of dismissing or being grossed out by them and laughing at their conditions. This of course includes people who use or need things like diapers past the typical age that they're worn as well for these very reasons, as there are many non infants and non elderly people that use them, and all these people should be cared for, respected, and receive proper medical treatment and accomidations.

[crohnsdiseased]

online I see people ask "what's the difference between stimming and tics?" and I go to replies and people are responding "tics you don't do on purpose, and stims are on purpose and you can stop doing them anytime" and that's... not super correct. for some people it is, but for a lot of us, stimming isn't a conscious decision, and we can't just stop doing it either.

when I get exited I clap, or I squeal, or I jump, without thinking at all. when I'm frustrated with people talking, or my mouth not doing what I want it to, I flap my hands or yell. again, without thinking or sometimes not even realize I'm doing it. When I'm concerned or thinking I hum. this isn't even mentioning meltdowns, where I lose control of my body and have injured myself. like. a lot. trust me I would stop that if I could it's not fun.

and I don't have tics. my mom has them from a brain injury, and I know someone at school with tourretes, and I also know autistic people at school who stim like I do without thinking about it.

stimming is a way of regulating and expressing internal experiences through repetitive motions or sounds. some stimming is voluntary, like pacing that I do when bored or stressed, but the majority isn't. not saying everyone is like me, just saying my experience.

at the end of the day it's not a huge thing, but it's an annoying pattern of misinformation I've seen a lot in autistic spaces.

[crohnsdiseased]

o yea i probably have POTS. like its pretty obvious. but also my sibling went thru diagnosis criteria for ehlers-danlos for me since they have it and i have enough to be considered hypermobile but not full EDS lol. my fingers have been hyperextending a lot recently (they always do but they’ve been like… locking hyperextended…? if that’s a thing)

[crohnsdiseased]

self proclaimed schizoposter nervously typing '911' into their phone and hovering their thumb above the 'call' key as they hawkishly watch a disheveled guy at a bus stop make repetitive movements and ramble to himself

[crohnsdiseased]

just felt like rambling about my school’s bullshit somewhere that isn’t *as* directly tied to me lmao

christ. i tested positive for covid (no fucking idea where i got it) and so they have to put me in the quarantine dorms, which already sucks because i have to move across campus during finals and be alone and whatever but i get it, they have to deliver us all food, it makes sense. i hate it but it makes sense!

the quarantine dorms are on the 4th floor of the freshmen dorms. which infamously have no elevator.

i email the guy handling it all to be like hey are there any lower floor options, i’m disabled and i don’t think i’ll be able to carry my belongings up Three Flights Of Stairs. he says no, but you have plenty of time to move in so it’ll be fine. (i had 3 hours to move in from the time the email was sent)

im like. ok. i’ll try. i guess. i gather my belongings and push a cart full of everything i need for 10 days— including shit like toilet paper, bedding, etc because they do not provide that in the quarantine dorms— Across Campus. i am disabled, i have covid, it’s fucking cold out, i am already tired from that. i get to the freshmen dorms. i get to the first set of stairs. i Cannot get my belongings up even One Step.

i immediately email again saying hey this isn’t gonna work i literally am unable to get up the stairs, i am disabled, can someone be sent to help me. while waiting for a reply, in the cold, i try lugging my stuff up the stairs again. can’t even get a step up. again.

after an hour. an Hour. i send a followup message. saying hey. im sorry for sending so many messages. but i am in the freezing cold, because i do not want to wait inside, because i do not want to spread covid. i CANNOT get up the stairs. Please Do Something For Me. i still do not get a reply. half an hour passes. my mom is threatening to call every official on the planet. me, being socially anxious, is like pppplease no id rather freeze.

after a while i am So cold and tired, and mind you i woke up at 7am after sleeping like shit bc covid has given me insomnia (usually im great at sleeping), so i go up to one building that has the office of res life. idfk what every office does so im like ok maybe they can help me. and i ask the front desk person if they can ask if someone can help me. they ask who ive been emailing with, i tell them, they’re like oh he’s back here, they go back and talk to him. they come back and say “im sorry we can’t help you.” this person seems genuinely sorry and like they want to help but that a higher up, mr. Ignoring My Fucking Emails, is saying they can’t. by this point i am mere seconds away from sobbing so im like :) thank you… and leave and then have a lil breakdown in the bathroom where i can’t even wipe my snot face bc i have fucking covid and i feel bad enough even using a public bathroom at all

anyway i gave my mom permission to call whoever she wanted and she called around. i was told multiple times someone would be ‘contacting me’ and nobody did. it’s another 45 minutes. she calls the health center and there’s a nurse there who is SO horrified that NO ONE IS DOING ANYTHING that she walks halfway across campus in full Plague Gear to me. and she carries my belongings. up three flights of stairs. the entire time being like “it is Ridiculous that they make students with covid do this wtf” and i thank her a hundred times and my mom sends an email being like “pls give nurse a raise. pls tell email jerk he sucks.” the nurse is my guardian angel.

30 minutes after arriving in the dorm, email jerk replies to me saying i should abandon my belongings at the bottom of the stairs (in the middle of the dorm yard) and go to the dorm and he ‘may’ have someone come by in 15 minutes to bring my things up for me. i say … no. no thanks im at the dorm.

anyway shoutout to my school i guess

[crohnsdiseased]

they should invent a digestive system that works

[crohnsdiseased]

Something I really don't see discussed is the intersection of ableism and fatphobia and how if you look at how fat disabled people are talked about you'll see a blatant desire for eugenics that's usually not even obscured

[crohnsdiseased]

[crohnsdiseased]

too many white and invisibly disabled people are using michael hicksons death not as an opportunity to acknowledge the intersection of medicine with racism, a long pre-existing history, and instead using it as an opportunity to fall all over themselves about how this could hypothetically happen to them—white and invisibly disabled people a part of the upper middle class.

michael hickson was determined to have “no quality of life” not because he was invisibly disabled and white but because he was visibly disabled and a black man. if you discuss this as if his death happened for any other reason than classic racism-masquerading-as-medicine, you are not talking about the actual issue at hand; medicine being a long-standing anti-black institution, and disabled black people facing discrimination as well as medical abuse through the lens of anti-black racism.

if you are non-black, especially white and invisibly disabled, maybe don’t use this as a time to center discussions about medical abuse around yourself? it’s fine to harbour personal anxieties on your twitter or tumblr, but i don’t want see white and invisibly disabled people yet again leading the modern day eugenics discussion as it hits media outlets.

[crohnsdiseased]

at what age do you accept that you and your digestive system are never gonna be friends again

[crohnsdiseased]

[crohnsdiseased]

folks dont say things like “differently abled” or “handicapable”... say it with me: theres abled people and then theres normal people

[crohnsdiseased]

acting like even mentioning IBD/IBS is gross/tmi/inappropriate/oversharing in a context where you wouldn’t question someone mention another physical disability Is Ableism. i can’t speak for IBS specifically because i have IBD but our issues are often SO much more complex than Bathroom Issues; i rarely even HAVE those, MY issues are severe pain and fatigue and immunodeficiency, etc. not to mention even if it were localized to bathroom issues that’s still something that can severely affect your life and that we still have to live through and we’re not gross for our digestive systems waging war against us. does that mean people have to listen when things actually DO head into unsanitary/bathroom talk territory? no, thats a normal ass boundary to have, though sometimes having places to vent about ‘gross’ symptoms is important. but it does mean people have to quit acting like existing as a disabled person is inherently infringing on their existence when there’s often so much more to it than digestive problems

[crohnsdiseased]

Habits, Tics, Stims, Compulsions, and Behaviors

You are tapping your foot. Someone asks you to stop. You do. You feel no ill effects aside from maybe disappointment at having to stop. You tap your foot often. This is a habit.

You are tapping your foot, whether you want to or not. Someone asks you to stop. You can’t. If you try to it feels like holding in a sneeze and the pressure builds up. It might come out in a different, even less controllable action. This is a tic.

You are tapping your foot. Someone asks you to stop. You do, but immediately feel worse physically or emotionally. It was a way for you to express yourself and how you feel. You may feel pressure. This is a stim.

You are tapping your foot. Someone asks you to stop. You can’t, because if you do something bad will happen, possibly some specific bad thing. You know it’s irrational, but not doing it gives you anxiety. This is a compulsion.

You are tapping your foot. Someone asks you to stop. You can’t, because if you do this specific bad thing will happen. It is not irrational to you, although it is to others. This is an erratic/disorganized behavior.

[crohnsdiseased]

my sister got me a vape pen for cbd oil and fuck me it’s actually... helping... i was skeptical but my body’s been a wreck for months and now it just. mostly isn’t.

[crohnsdiseased]

It really freaks me the hell out that some people are just out there not in any pain what so ever. What is that even like? How do you even know you’re real? You look just like me and yet on the inside you’re fine? No random pains or aches or stabbing sensations?