#Actually disabled

[crippledpunks]

chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

[matchakuracat]

chronically ill/physically disabled people, how do you deal with doctors appointments? what do you say/do to advocate for yourself? im autistic and not diagnosed with a chronic illness yet and i really struggle to know what to say to get them to listen to me and understand so that i can get the help and care i need. even if i bring someone with me, they also need to know what to say and i don't know anyone who understands well enough to explain to the doctor for me, which means that i have to tell them what to say before going. but that's the problem since i just don't know.

i have chronic joint pain that ive had for years but has only gotten worse over time. i also have hypermobile knees which are the worse they've ever been right now. i'm chronically fatigued and barely have the energy to eat and do basic hygiene. i have a few friends that i talk to fairly regularly and im very thankful for them but i still struggle so much with maintaining a social life when i cant even maintain my own physical wellbeing. i only go outside when i absolutely have to/when my pain is low enough and i have enough energy. on average i probably leave my house about once or twice a week, usually to go to medical appointments, to an internship i have once a week or to go grocery shopping. i usually try to do both at the same time if i can (like going grocery shopping after my internship) but most of the time i have to ask my parents to get me groceries since i dont have enough energy to. all i want is to be able to go outside just to take short walks and enjoy nature and the fresh air but i can't do so without the right treatment/a mobility aid. everything im doing right now is bordering the line of too much. im constantly tired and overwhelmed and everything feels like a struggle, even the smallest tasks most people do everyday without thinking twice about it.

i have almost only had bad experiences with doctors and other medical professionals like physiotherapists, which has given me a lot of extra anxiety on top of my already pretty bad social anxiety. i really struggle to make appointments and even more so to go to them, and when i bring myself to do so i really struggle to express myself and explain how i feel and how i want them to help me. i almost always get shut down and offered no actual help with any of my problems. i just don't know what to do anymore.

if anyone has any advice i'd really appreciate it. i know that i can't give up because my life right now without accommodations is too miserable, but i also don't know how to move forward.

sorry if this was hard to understand. i really tried my best to explain but im having a bit of a hard time expressing myself right now due to feeling worse than usual.

[stories-by-starlight]

Too many people don’t take visibly disabled people’s emotions seriously. Not just in way that they don’t care about how feel, although that true for many people too. But also in way that they treat their/our emotions, especially negative emotions, as a spectacle.

A punchline to a bad joke.

We seen this for long long time, but the right words describe it never came until recent.

Many people do things bother or hurt us, then laugh it off when we get upset because: “What are you going do about it?” Because they know can’t yell back or fight back or make them stop, and it’s funny see us try because we look so odd.

Because don’t look “right/normal”, human emotions stop being real emotions and start being entertainment. Or maybe they confusing, to them.

Ask everyone to please respect boundaries of others. And if you do/done these things to people, please stop. It’s not funny, just cruel. Disabled people not your entertainment.

[beansintrenchcoats]

Let's talk about the other symptoms of chronic pain disorders.

Let's talk about how during a flare up, my brain fog becomes so bad that I can't remember my own full name or date of birth.

Let's talk about how I often can't stand not just because my legs hurt, but because they're so weak and shaky they can't support my weight.

Let's talk about how debilitating fatigue can be, when I can't move a muscle because I'm so bone-weary tired. My pain is the main symptom of my chronic illness but there are others. There are so many others. And they all fucking suck to live with. So why am I not taken seriously when I talk about them?

[holierthanth0u]

i dont expect much traction here, but out of curiosity: if you are nonverbal/semiverbal or experience verbal shutdown, are you still able to audibly laugh?

personally during verbal shutdown i cant laugh, which makes me wonder about other peoples experiences.

EDIT: please be mindful that you cannot "go nonverbal", which is why the term verbal shutdown exists. if you are nonverbal/semiverbal, it means you are like that all the time. verbal shutdown is temporary. link

[pixierainbows]

[atomicraft]

JRWIBLR DISABILITY WEEK INTEREST CHECK !!!

hello !! this is an interest check for potentially holding a disabled jrwi character week !!! Similar to the character weeks held in the past (such as the fnc week or ghostknife week) each day of the week would have a prompt centered around being disabled.

Anyone would be able to join, disabled or not ! It would probably be held in August (but the poster would come out a month in advance to give people time to work on their ideas) and I think it would be a really fun way to highlight disabled voices and rep in the jrwi community :]

[wxrmeaterz]

if you get upset at disabled and mentally ill folks for not doing what you consider "basic hygeine" cmere a sec

*whacks you with my metal pipe*

[lastoneout]

Anyway as much as I love the interactions checker on drugs.com there needs to be a website that breaks down in detail exactly how to safely smoke/drink/ect. when taking certain medications because trying to google "how long do I have to wait after being given an opioid pain killer before it's safe for me to consume marijuana" just gives me tons of results about how I'm going to die if I take them at the exact same time and that is not!! what I am asking!! and tbh despite weed being legal here understandably this is not a question I am comfortable posing to any of my actual doctors, so??

[spoonitup221]

Hot take( not ): using disabled bathrooms even though your abled should not be something we have to discuss 😍 just let disabled people use the bathroom bro you have like 1 million other stalls and we get like 1-2 😍😭

[crippledpunks]

if you are a disabled person of any severity and can make it through a grocery shopping trip, i am proud of you and look up to you. if you can't make it through a grocery shopping trip for whatever reason, pain, anxiety, psychosis, ADHD, autism, depression, memory or attention issues, fatigue, exhaustion, irritability, confusion, dissociation, or anything else, you have my condolences because i'm right there with you, that shit sucks ass. it's needlessly complicated and its something that abled people take for granted

of course disabled people cant go across the entire store to put an item back every time. of course disabled people may need help getting items from high or low places. of course disabled people will get lost even in labeled places because of object blindness, blindness/eye problems, bad attention span, anxiety, or other issues, of course there are who can't make it through the entire store without collapsing

these stores are designed to confuse customers and trap them inside for as long as possible to increase impulse spending, of course disabled people are going to struggle to navigate the store. i love you if you're disabled and can navigate the store, kudos to you, but i also love you if you can't. it's not easy and people take for granted how easy it is for them when others can't do it at all

[sunnycycle]

A lot of chronically ill people talk about life before their disability. their mourning for who they was. I don't have anything to mourn. I assumed constant pain and memory issues and fatigue was normal.

I only kne wI was chronically ill when i did research. When I found people like me. I do not have anything to mourn. I've never been anything but chronically ill.

[spectrumgarden]

If your way of responding to "an autism diagnosis can come with negative consequences" starts at and ends with "so dont get diagnosed" frankly I think you should shut up forever lol

[beansintrenchcoats]

gah this flare up is kicking my ass... might need to go into school using crutches tomorrow instead of my cane but i do NOT want to be dealing with another wave of "awww did you break your leg!!!"

[pleastrop]

everyone talking about overdoing it on good days, but what if i just over did it on a bad day?

like, if you need me just don't, because it will take make an unimaginable amount of time to recover from this

[chronicallyillandcoping]

Warning: I suggest if youve never heard of the subreddit mentioned in my post not to look it up.

The subreddit Emergancy medicine makes me

A) Never want to go get help for life threatening symptoms ever again

and

B) Questions why medical professionals decide to go into the profession they do when they all seem to have 0 empathy for young disabled people.

Like even if you think young people with disorders that are (for lack of a better word) "popular" on TikTok are faking If they're presenting with concerning symptoms you still need to treat them. It shouldn't matter but POTS has been on my notes for a long time (way before Tiktok helped it gain awareness) and its scary to think doctors will refuse to treat my more severe symptoms because they think anyone with a POTS diagnosis is faking.

The rise in diagnosis is based on information sharing people are seeing tiktoks and recognising symptoms in themselves it was never a rare disorder just an underdiagnosed one.