chronicstuff

Latest Posts by chronicstuff

visibly disabled people will present others with the most basic and easy to understand request like “please don’t talk to me like I am a small child” and in response people will just start monologuing about how difficult and confusing this is for them and how they’re doing their best and how they need patience and understanding too and it’s so fucking tiring lol

disabled people should be allowed privacy. visible disability isn't an invitation to demand personal information from someone. and disclosing disability isn't an invitation to lay out each facet of that disability in excruciating detail. someone having a medical episode deserves privacy even if that episode happens in public. someone who is disabled and struggling or taking a break deserves to refuse people offering help without having to explain why. a disabled person who mentions some things about their disability but not every little thing is under no obligation to explain anything more than they already have. disabled people don't just deserve basic rights. they deserve dignity and grace and respect. and they deserve privacy

weird as fuck living in a culture where it's considered more impolite to speak up and defend yourself against someone treating you unfairly than it is for someone to be rude to you in the first place

Sometimes it feels like i am already dead. Not part of anyones life anymore. Locked up in my flat. Just a liability for my parents who dont even like me. Like a ghost who is damned to haunt this room, but still has pain and wifi.

Doctor calls you with your bloodwork results and just says “I’m really mad at you” and then hangs up

Please understand that not every marginalized person is going to have a list of peer reviewed sources and accurate statistics proving the bigotry they face in their daily life and you sometimes just have to decide to believe people when they tell you they are suffering

Sometimes, I still feel so able bodied.

Like the aches and pains are quiet for just a moment long enough for me to remember what freedom I used to have. It's almost like if I yearn for it hard enough, I can have the old me back. The me that could still achieve all my dreams. The me that had no idea what was coming and how much it would all cost me.

Somedays, I still feel the urge to live the way I could before. Carefree and boundless. God, I can almost taste it.

Some people don’t want to hear this but sometimes accessibility is not sustainable or eco-friendly. Disabled people sometimes need straws, or pre-made meals in plastic containers, or single-use items. Just because you can work with your foods in their least processed and packaged form doesn’t mean everyone else can.

When abled people are involved, the concept of "doing it once in a while for a few seconds doesn't mean you can do it consistently on command like it's nothing" is easily understood.

For example, if someone is able to walk outside without a jacket in the cold to get the mail, everyone would easily understand that they'd still need a jacket if they were outside for a prolonged period of time. If someone is able to hold their breath underwater for a few seconds, everyone would easily understand that they'd still need an oxygen tank in order to stay underwater indefinitely.

But when disabled people are involved, that concept is somehow forgotten. You can stand for a few seconds? You must not actually need that wheelchair. You can socialize once in a long while if the conditions are exactly right? You must not actually struggle to socialize and any struggle you think you have is just fear and negativity. You can be physically active for an hour on a good day? You must not actually be too disabled to work. You have a lot of knowledge on a topic because it's a special interest of yours? You must be "smart" and any bad grades you get are because you're lazy.

Please stop trigger tagging with #epilepsy tw/cw/warning/etc.

I need every single person to understand how horrible tumblr’s tagging system is

I go into the tag for epilepsy and its all flashing lights. We can’t use our own tag because people without epilepsy fill it up with improper warnings.

Use ‘flashing’ in place of ‘epilepsy’ in your tags. You aren’t warning people of epileptics, you’re warning us of flashing lights. Please please tag properly. Epileptics say this endlessly and constantly and it’s ignored. You are risking lives by doing this.

Here’s proof of what I mean:

THIS POST IS 100% OKAY TO REBLOG, I ENCOURAGE PEOPLE WITHOUT EPILEPSY TO ESPECIALLY DO SO!

You should be able to say “don’t touch me” to anyone ever in any context and not have it be considered in the realm of surprising or insulting imho if we ever needed to normalize something it’s this

I think that it's really important for people to realize that being disabled is traumatic. genuinely. your body and brain feel like they are breaking down and wrong. you are in constant heavy stress from stuff like chronic pain. most disabled people i know have a somewhat regular emotional break down from the trauma of it all. and we are expected to just smile through it by society, to not be in the way, to not be an issue.

I basically live my life in bed when I’m not actively doing other things. That’s the only way I have the energy to do anything at all ever. When I do one of my hourish rehab classes, I’m usually flat in bed for most of the rest of that day and the entire next day, because delayed-onset fatigue is a thing my life is defined by.

It’s not remotely what people think of when they think of “pacing”, but it’s much closer to the daily reality of most people who live with fatigue disorders than the “I take a break for half an hour then I’m fine to go on” people picture when they hear the phrase.

I have heard the word “pacing” at almost every medical appointment I have ever mentioned fatigue at, and never yet had the slightest advice on doing it. Not even the ongoing CBT and Mindfulness websites recommendations I get if I ever mention low mood etc. The term is applied as a panacea by people who have zero understanding of what “pacing” is, how to achieve it, or what it actually means in the context of most fatigue disorders. Or how much pushback most people with those disorders will have when actually trying to implement it, because most people, including healthcare professionals, parse resting as “not trying”.

For people with fatigue disorders, pacing is *radical* in its effects on capacity. It lets you actually have some life, which is the big thing fatigue disorders feel as if they take from you. But we are stuck figuring it out for ourselves against enormous pushback.

different than what I usually post but I'm mentally so so tired and in a ranting mood lol

able bodied people doing things that aren't ideal for their health is so normalized, but when disabled people do it it's wrong or worse somehow?? are disabled people not allowed to be human sometimes??? "isn't that bad for XYZ?" "didn't you say you shouldn't XYZ?" "i thought people with XYZ shouldn't-" I'M AWARE!! I DID NOT ASK!! im not a toddler that you have to remind to eat their veggies or not to stand too close to the tv, im a grown ass adult. ive been living with my disability and chronic illnesses as long as i can remember. sometimes i don't wear my braces when i should, or drink more alcohol than i should, or have caffeine, or do things that I KNOW could trigger flares or seizure or some other issue my body feels like being a bitch about. im fucking human. im allowed to do things that make me happy even if it's not the best for me, just like anyone else. let me live, christ.

When talking about disability and chronic illness, people don't understand that happiness isn't optional. Humans have a fun meter in their brain just like the sims, and that doesn't change for disabled people.

I love recognizing limitations and accommodating myself when I can, but at the same time, I WANT to do things for my own happiness. I WANT to cosplay at an anime convention, even if that means I won't be able to walk for 3 days. I WANT to go canoeing with friends, even if that means I'll be sick for 2 months after. I want my room to be clean and I want to decorate my space and I want to go have fucking fun in the real world and not just video games for once.

And when it comes to instances of stuff we do purely for fun, people still talk down to us and give us the "know your limits" speech like us having fun exists in the same context as breaking our bodies for the sake of capitalism. It's not the same thing. Quit shaming disabled people for doing shit. Let disabled people chose informed risk for the sake of fun and happiness. Fun and happiness are not optional.

PLEASE HELP A DISABLED PERSON

I had a fainting episode from my POTS. I have a broken nose, stitches on my nose and the inside and outside of my mouth, a concussion, a sprained neck, and an injured tooth and tailbone

My husband has to stay home with me, and we have so many bills including medical bills and medical supplies that we need to buy. If ANYONE can help, thank you so much.

One of the most dangerous things in the world is not being able to say no to people because you don’t want to upset them or dissapoint them. This will completely ruin your life in every way possible, at work, in your private life, your sex life and your friendships. It’s a way of removing your own consent in your own decisions and go against your wishes, it is always a crime against yourself. Let yourself have a say. Upsetting people is better than traumatizing yourself.

Regular reminder you don't owe anyone information about your health, disability, or medical treatment. You have the right to provide as much information as you are comfortable with and no one is entitled to more.

it's funny that people act like disabled people are such a downer and negative and pessimistic for acknowledging their health conditions when we have to be the most optimistic suckers on earth to repeatedly go to drs with the expectation of actually recieving treatment. did i say funny sorry i meant soul destroying

We need to recognize the collective trauma disabled people went through and are still going through with covid when everyone around us told us that our lives were less important than their convenience. That "only the sick and elderly will die so why should I do anything differently?"

I lost my faith in humanity at that point and I don't think I'll ever be able to get it back.

like yeah. you're not a bad person just because you're disabled. but also you're not a good person for being abled. you're not a good person for being abled. it doesn't make you better than disabled people. you're not a good person for being abled. internalise it. it's not a reward. you did nothing to deserve this - because health is not something that people "deserve" or don't. it's something they have or not, for any number of reasons

I won't lie gang... this past month I have gone from using a cane to get around outside to only using my wheelchair- propelled by someone else- to get from my bedroom to the bathroom. needless to say my condition is progressing at a really steady rate and things are getting scary. I am unable to make myself food or even hold my phone and type for too long. However as this is all so new and happening over the christmas/new year period I am not getting adequate assistanc or healthcare as I still need to APPLY FOR ASSISTANCE to help me APPLY FOR ASSISTANCE which could overall take 6+ months. Despite people pushing me to remain hopefull, I can really only see myself getting worse from here. My resilience can only keep me awake for so long. What I really want to ask, specifically the me/cfs community but the wider chronic illness community too, is for help arranging a sort of "living will" for however long I'll be alive but not able to do very much. my will for what happens to the life that I used to have before it all got worse - and how I would like to be taken care of. Are there any templates out there that I can send to my carers? If not that, some advice or words of support anybody can give?

you know as disabled people it's actually pretty scary that you can't trust your doctors. like people who have medical trauma or distrust or dislike doctors and nurses aren't doing it for fun. we need these guys to help with our lives. we need healthcare to stay alive or to stop from getting worse, or to function at all. but often when you're dismissed and not communicated with you're left floundering and often have to make decisions yourself without that specialist knowledge. sometimes doctors know less than you about your disability anyway. sometimes they're wrong and give you advice that's detrimental to what you need or want, and you kinda have to just trust that the next guy is also not wrong. i think we're pretty lucky if we can find other people with our condition who are well researched in it. but i still think that uncertainty is something that disabled people shouldn't have to navigate

chronic illness really makes the weirdest ‘would you rather’ scenarios come to life.

like, would you rather: show up to christmas with no presents for anyone or show up having not showered for a week?

would you rather: feed yourself or do the dishes?

you can choose both but your penalty is to spend an unknown amount of time bedbound afterwards.

who up experiencing emotions they can talk to no one about

Image ID:]

A grid with four squares. The first square reads 'the day after overdoing it: "huh, I don't feel as bad as I thought I would!". The square next to it shows a picture of the "The Fool" tarot card from the Modern Witch Tarot Deck.

The third square reads 'That evening, trying to get to sleep:'. The fourth square shows the "Ten of Swords" tarot card from the Modern Witch Tarot Deck. It's shows a white femme character lying on their side, on their phone, while ten swords are stuck in their side.

[End of image ID.]

to me, the universal trust in doctors from people who haven't experienced medical mistreatment/neglect is akin to the trust that upper middle class and white people have in the police. they haven't experienced the mistreatment themselves so they assume it doesn't exist. they assume that every doctor or police officer is only in it for protecting people. they assume that the people who made the rules for these organisations are somehow all-knowing and know the truth about what is morally correct for society. the difference is that there actually is such thing as a good doctor, while there is no such thing as a good cop.

Disabled people are not obligated to do everything that a non-disabled person can do. Stop treating us as though our bodies are the same. What you do normally can be detrimental and dangerous to us.

what if ablebodied people believed disabled people when they said stuff exhausts/hurts them, even if said ablebodied people didnt understand or couldnt relate. lol