🍯.chrncsick - Blog Posts

why is accessibility so inaccessible… someone explain how this is supposed to make sense

if invulnerable means i dont feel the affects of my chronic illnesses, then i would probably do something super cool and crazy.

id clean my house.

30 whole minutes a month of pain/fatigue free cleaning??? do you know what i could accomplish??? id be unstoppable. maybe id also do a cartwheel or smth for funsies

If you could become immortal and invulnerable for 30 minutes once every month (it has to be all at once, you can't chop the time into smaller segments and use minutes separately), what fuckery would you commit?

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.

Something that really bothers me about disability activism and representation is how people with gastrointestinal illnesses or disabilities continue to get the short end of the stick and that nobody ever talks about it because it’s “taboo”, which it absolutely shouldn’t be. We can’t be open with people IRL, even in disability spaces, about our conditions because they’ll either view us as disgusting or triggering or they’ll view us as sex objects because of their fetishes. We don’t fare much better in fiction, with GI disability rep being largely allocated to either grossout humor, the author’s barely disguised fetish, or just actual pornography about our conditions.

It sucks because I have a lot of health issues, and I can talk about my chronic pain or my stigmatized mental health conditions with no fear of being shamed, but it feels like w/ my GI issues I’m keeping a dirty secret because that’s how people - including other disabled people - treat these kinds of conditions. People like me shouldn’t be made to feel like we’re outsiders in our own spaces.

(Note 1: This post is not meant to kinkshame. I bring that topic up because unfortunately it IS some of the only rep we get, and we deserve representation that talks about our disability as a disability and not something sexually arousing)

(Note 2: Other disabilities/illnesses are treated this way too. This is just the one I have experience with.)

one of the worst parts for me about chronic illness is not having answers.

im a very logical and analytical person i love things to make sense i love patterns and reasons.

i have answers for pats of my health, and im so grateful for that, but the parts that i dont have answers for haunt me.

i think about it all the time. what if its not real and thats why theres no answer? what if im not explaining my symptoms right and thats why i havent had the right test that would give me the right answer.

i know logically that its a waste of time to think about, but i cant help it, i obsess over it. not understanding the world is one thing, but not understanding my own body? my own life? thats what gets me.

its devastating, seeing the life ive longed for happen to others while im stuck in bed in a flare up… again.. its so hard.

i unfollow a lot of people for this honestly, if i havent seen them in the past few years then i dont see the point in seeing a bunch of posts that make me feel bad, its sad.

Being chronically ill in your 20s is stupid you have to see your peers like “started a family🥰” “got married😍” “bought a house😇” “scored a promotion😋” meanwhile you’re fighting for your life to take a shower

ITCHING to do stuff. ANYTHING lemme cook or clean or write or sew or draw anything please im so bored

reminder that productivity doesnt equal worth because i am forgetting this at the moment

I MISS MY HOBBIES 😭😭😭😭😭

im on day 39 of a migraine, hospital have given up on me, makes it hard to not give up on myself.

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.

hey all, originally this post used the term “deformed” and some people who were born with illnesses that have caused them to look different have asked me and other people to not use that word unless they have an illness that causes such. completely valid so i changed it.

i was not born with an illness that did that, however i have many medical issues that have lead to my body looking different to those around me. i do not know whether that makes me “valid” in using that term and i dont feel comfortable sharing my medical history to try and “prove” as such. so i will no longer be using that term online.

i also want to point out the OR in the first sentence of this post. i am bringing up two different occurrences here, and expanding on the disabled one.

love and kindness i am not offended by any of this 🩷

being unattractive or physically different/disabled DOES NOT equal being morally bad/evil. there is an atrocious amount of ableism that occurs when someone doesn’t look “normal.” and i am so fucking sick of it.

in media it is (almost) always the villains who are different/disabled. and media is a massive part of how people form their world views.

i want to mention arcane for example, because people seem to be confused about what good representation is. people praise the hell out of that show, and for good reason it has great things about it, but people told me it had good disabled representation. so i watched it. and while parts of the disabled representation is good.. almost all physically different/disabled characters are portrayed as bad/evil/villains at some point in their story (or all of it.) and then by the end of the show most of them are dead.

abled people i need you to understand that is not good representation. please look out for these tropes it happens ALL the time.

good representation includes different/disabled characters who are heroes and morally “good” too.

if you make all your villains physically different and none of them are heroes i hate you. i am so sick of this.

THIS its so important to understand that while yes absolutely we need support and funding for sick kids - these same kids will likely still be sick as young adults and need support then too.

I feel like people forget that pediatric illnesses generally last into adulthood like…childhood cancer survivors often have medical complications for the rest of their (adult) lives. My juvenile arthritis will be around when I’m 75. Crohn’s disease, cystic fibrosis, congenital heart defects - all of these things, when acquired in childhood, have lifelong complications. Childhood diseases aren’t just cute, happy kids smiling from hospital beds. Theyre pain and suffering and learning to live differently forever.

i want my life back fuck being ill.

THIS like im not lazy im not unmotivated i have so much i want to do and see but i CANT. do you know how frustrating that is??? nobody wants me to get better more than i do.

its hard to think about world issues when most of my world is just trying to deal with my health.

my world feels so complicated and big and demanding and exhausting.

and then trying to think about the 8 billion other people living lives.. many in countries where there are political wars or genocide or severe environmental damage etc.

its overwhelming.

really struggling with this atm.

ive lost all the strength i fought so hard for the past two years. it doesnt seem fair that it can all be taken away so fast.

im exhausted. trying is exhausting.

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

disabled people!!!

what are some illnesses/disabilities that youve never seen representation for and would love to see?

let me know in replies reblogs asks messages whatever suits you :3

this is officially my longest migraine. day 28.

i am beyond sick of this. mentally struggling with how reliant on my carer i have to be during migraines.

i can handle it when its only a few days but this long is a whole other world. i dont experience this level of dependance that often so im not really used to it still.

on day 5 of a migraine get me out of here

being unattractive or physically different/disabled DOES NOT equal being morally bad/evil. there is an atrocious amount of ableism that occurs when someone doesn’t look “normal.” and i am so fucking sick of it.

in media it is (almost) always the villains who are different/disabled. and media is a massive part of how people form their world views.

i want to mention arcane for example, because people seem to be confused about what good representation is. people praise the hell out of that show, and for good reason it has great things about it, but people told me it had good disabled representation. so i watched it. and while parts of the disabled representation is good.. almost all physically different/disabled characters are portrayed as bad/evil/villains at some point in their story (or all of it.) and then by the end of the show most of them are dead.

abled people i need you to understand that is not good representation. please look out for these tropes it happens ALL the time.

good representation includes different/disabled characters who are heroes and morally “good” too.

if you make all your villains physically different and none of them are heroes i hate you. i am so sick of this.

yes. yes. yes.

honestly i get so excited when i see someone switch over to the “i could never” response because so many people do the “lucky you, you get to be lazy” and that one just really hurts.

so when i see even a small step in the direction of understanding my life is not glamorous, even if its still a response i hate, i feel excited dkdhks

i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.

how could ANY of what i go through be seen that way i just dont get it.

i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.

how could ANY of what i go through be seen that way i just dont get it.

yea..

It’s hard not to feel alienated sometimes by your friends, even if unintentionally, as a physically disabled person.

“Oh, let’s go to this place!”

“How far away is it?”

“It’s only a three-minute walk.”

But you can’t do that three-minute walk. And it’s uncomfortable speaking up that you can’t do that three-minute walk. And maybe you’re well enough that day to push through it, but you pay for it afterwards. The worst part, your friends think they’re being accommodating because it’s such a short walk. However, a short walk to them isn’t a short walk for you. But eventually, you simply start saying no to hangouts because you don’t want to be a burden because you can’t engage in basic activities that are easy for everyone else.

Sometimes you do speak up, and you’ll ask something like, “Can we drive there?” and there’s always pushback. “Oh, it’d take longer to drive there than to walk” or “walking is good for you!” You regret mentioning anything at all; the discomfort and guilt linger.

Structural inaccessibility adds another layer to this problem. You’re forced to say no to countless hangouts that aren’t wheelchair-accessible. Even if you can walk, you might not be able to walk far enough to enjoy the planned outing. People start noticing you always say no, and before long, they stop inviting you at all. Maybe it’s better this way. It still feels lonely.

laughs at how its less than a day since i answered this and my number has already gone up again 👍🏻👍🏻👍🏻

oh wow, i love that honestly. it put into words exactly how ive felt about my acceptance of being disabled.

"Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it."

Ilana Jacqueline "Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms"

i really cannot understand how people see disabled life as this glamorised lazy life. i genuinely cannot wrap my head around this.

how could ANY of what i go through be seen that way i just dont get it.

i still have this same migraine ive had multiple hospital admissions for it now im actually losing it

on day 5 of a migraine get me out of here

disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)

what happens to consistency, to habits, when you have a dynamic disability?

i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.

you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.

for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.

for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.

and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.

then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.

understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.

fellow LSN disabled people, this is coming from a place of much compassion and love. i hear you when you say you’re jealous of MSN/HSN people’s support. how you wish you could have such support. mental health is complicated and it’s hard to see through emotions and trauma.

but i really need you to understand that our higher support needs disabled friends aren’t inherently privileged for having said support. while it may be that if you had that same support your QOL would improve, they most likely need the support you’re jealous of to literally survive.

the point i really want to make here is there is a difference between support for QOL and support to SURVIVE. people die without these supports. that is not a privileged position to be in.

you’re allowed to be upset and angry that you don’t have the life you want and deserve, but please focus those feelings on society and governments. because they are the ones that created a world in which it is so hard for us to exist.

we need to be friends to each other, not throwing around misdirected anger and blame. please take time to listen to MSN/HSN disabled people and learn about their experiences, there are so many people out there begging to be heard.

guys what wards do young people go to, im always the only young adult in my wards, im clearly missing out on the cool areas 😔😔