Chronically Ill Babe

This goes for other symptoms as well: although pain can definitely contribute to people’s experiences of these symptoms, fatigue and brain fog are actual migraine symptoms, not just pain symptoms.

people look at wheelchair users and think "well you're sitting down all the time that doesn't take effort" no actually it does. pushing a manual chair takes a lot of fucking effort, especially without a power assist. repetitive stress injuries are a huge problem manual chair users encounter all the time. going up hills and ramps is so deeply fatiguing.

this doesn't just apply to manual chair users btw. power chair usage can also be really exhausting, especially for people with complex seating needs. going over bumps and cracks can trigger many symptoms such as spasticity, pressure sores are common, even just sitting upright can be exhausting for many people.

“I have ME/CFS, the thing that helps me more than anything is exercise. I do get PEM, but I plan for it. If I go run(?!) or exercise, then I come home and shower then lay down in my room for about 30 minutes with the light off” is one of the most ridiculous things I’ve heard about ME and that’s saying something. PEM is not “after a run and a shower, I lay down for 30 minutes in the dark and I’m better” fuck out of here

No person with ME just “lets themselves” be stuck in bed. I “let myself be stuck in bed” so I definitely deserved the bed sores I got when I was too weak to be able to move my body to switch positions.

Also being bedbound isn’t for when you’re sick with a common cold or stomach flu. You can still get out of bed to go die in the bathroom and come back and repeat. It is not the same. And it certainly isn’t a choice. You want to be us so badly and yet you hate everything to do with us. It’s fucking weird.

what is PEM?

1. see this so many times, a lower support needs autistic / adhd person who expected live normal among Ableds talk about struggle w day to day n be so exhausted every day n so many (so many!!!!) similar lower support needs autistic / adhd ppl in notes n comments etc talk abt be similar & feel so broken n failure n alone etc bc no one talk abt it. honestly so heartbreaking n frustrating for me knowing it common LrSN experience

it so common!! so many people struggle with it! but despite be so common, ppl not really talk about it abled ppl don’t n many LrSN ppl also don’t bc embarrassed / don’t know to / been shut down n shamed before / don’t realize not everyone like this. no one know how common of experience it be. despite be so common no one rly have good easily accessible solution to it

2.

n bc am higher support needs person n this be higher support needs blog inevitably going talk about how this impact higher support needs people bc it absolutely does

bc ppl not talk abt this experience n so not realize how common this be among LrSN ppl, AND ppl talk even less abt more severely disabled people & ppl w mid n high support needs, the General Nondisabled World (which many LrSN ppl made to exist in) kick us to our own separate lil contained hidden place to point no one realize we exist or should be put in your world view. so some LrSN (autistic/adhd) ppl inevitably think they higher support needs than they actually be

ppl see struggle w these things n auto label it / themselves who struggle / other ppl as mid or often even high support needs,

bc compare to General Nondisabled World it feel very big n the distress feel very big n the struggle feel very big n it is (!), it be higher than what General Nondisabled World demand them to be. but bc that General Nondisabled World on purpose hide the rest of us who cannot even pretend to blend into n fake it until we make it there no comparison to the whole disability spectrum.

so us mid & high support needs ppl get pushed out even further, where words for us no longer recognizable for us, we forgotten even further.

try seek community using our own terms n words n experiences n descriptions n quick shorthands bc don’t want to / too invasive to / too long to / shouldn’t have to list out every single thing we need support on n be essentially told hi now you too much too high too difficult for even high support needs

low support need get push to mid support needs, mid support needs to adapt get push to high support needs, n high support needs people left no where to go once again

it not about compare to nondisabled ppl bc to them we all too much. it about overall disabled people

n it not just abt you yourself. it about wider it about all

have heard many low support needs ppl come to me n say they been listening to me & other ppl w high support needs & advocating with us centering us in their advocacy n believe we deserve support n through that. they recognize & get more okay n comfy with admit & accommodate their own support needs n deserve support too

support the most marginalized n entire community will feel good effect it trickle up

so

tldr like

low support needs not mean no support needs, unfortunately low support needs not mean no struggle it can often mean immense struggle just like mid n high support needs ppl. struggle with clean house laundry cooking shopping n forget to eat until suddenly it end of day n can’t keep job n constant in burn out all the time n severe depression anxiety ocd etc all be really really common lower support needs autistic / adhd experience in current world unfortunately n deserve more recognition n support n be talk abt more than it be getting right now but it cant just be solely from high support needs people.

housebound doesn’t mean “cannot leave the house under any circumstances”, but in fact means “can leave the house, on the requirement of needing assistance from either a mobility aid to avoid worsening symptoms, or with the help of another person, and leaving is going to take immense effort, exhaust me, and take me a long time recover from”.

happy disability pride month to severely disabled people who don’t have access to proper treatment or medical equipment, and are stuck without care that would ease symptoms or make their life easier

happy disability pride month to severely disabled people who won’t be getting better, and who will be getting worse, or who will be dying due to their conditions

happy disability pride month to severely disabled people with photosensitivity who can’t look at screens for long, and feel even more isolated by not being able to interact with much the disability community, even online

Autism is a spectrum. Autism also presents differently in everyone.

That being said, I would be surprised if a single autistic person out there has never had their tone of voice criticised in a way that absolutely knocks the wind out of them, because they hadn’t realised there was anything off with their voice.

As a child, this criticism comes in the form of being told you’re giving ‘attitude’. You, of course, have no idea what attitude you could possibly be giving, because you thought you were saying something your parents couldn’t possibly have an issue with. When you raise this, they tell you that the sentence itself would have been fine, if only you hadn’t said it like that.

It’s upsetting, to be completely unable to understand what you did wrong, especially when you’re already struggling to understand so many little things about this world.

As you grow, more and more people start to make these comments. A woman on the bus won’t stop shooting you funny looks, because you’re talking too loudly in your excitement about your favourite tv show, and you don’t understand why she keeps looking at you until a friend explains later. Then, a few months after, you and that friend are having one of your classic, entertaining debates about something that doesn’t really matter, and they groan and ask: “why does everything always have to be an argument with you?” And you are left completely stunned, because– had you been arguing? Have you been arguing every single time you’ve had one of these debates, and have they been hating it this entire time, and is that why they seemed to be busy every single time you asked if they wanted to grab coffee?

Eventually, you move on. You stop feeling so paranoid that every word out of your mouth is being judged, until you’re correcting someone on something, and they say: “Why do you always have to be right all the time?” which is a terribly confusing thing to hear, because why wouldn’t everyone else want to be right? Why would the rest of the world be content to believe the wrong things, when they could learn the truth? And then it gets worse, because they start to say that it wasn’t that deep, and they didn’t actually care, and you feel stupid for talking about this subject for half an hour– but also don’t understand why they bothered arguing the point at all if they didn’t care. After all, the actor in this show is the same one you saw in something else, and if that didn’t matter to them, why did they disagree? Why did they keep on disagreeing whilst you tried to convince them to imagine him without a beard and inside a jungle, and why did they keep insisting they just couldn’t picture it when you googled the cast lists and they both turned up the same name?

But now you feel stupid, and silly, and honestly, just confused. You weren’t shouting at them, were you? You weren’t insulting them, or acting like the thing you were trying to tell them should have been common knowledge, so how could they possibly have gotten offended? How could the desire to be correct be something that they don’t have?

It is confusing. It never stops being confusing.

But one day, you will find someone who makes it a little easier. Someone who is also autistic, so they don’t misunderstand you in the way the Neurotypicals do. It feels good. It feels freeing. They are your safe space, and you are theirs, and you understand each other wholly. There is no need to put words in each other’s mouths, no interpreting things from your ‘tone’ that you did not explicitly say, and it seems to everyone else like you understand each other so well that you must be reading each other’s minds.

And then, one day, you are watching tv together. A character does something that breaks your heart, but you are so invested that it’s just a beautiful tragedy. And you turn to your partner, and they shake their head, and say: “bad writing.” You don’t understand. This is your favourite show in the world, so you ask them to explain, and they do– they say the character should know better than this. And because you care ever so deeply about this little world that you watch, you explain how the story has shown over the season that she does not, in fact, know better. Her actions are no surprise– they have been specifically set up so that the only way the story could end is here.

But they don’t get it. No matter how many times you try to point out the scenes that led to this moment, they do not like this ending– and their opinion would be fine, except that it seems based on them not seeing how the character has been set up in such a way that it makes complete sense they would end up where they do. And whilst, yes, you are upset when explaining this because it is your favourite show and you want them to love it as much as you do, and it pains you that perhaps they do not– you are also not upset at them. You are animated, because you are desperate for them to see– if they could just understand the backstory, you think, they would understand this ending, and they would love it as much as I do– and you hear them starting to raise their voice, but they are autistic with no control over their volume or tone either, so you assume it is not indicative of their actual emotions. Because why would they be getting upset, when the only logical thing is that they would be trying their best to wrap their head around your point?

But then the dam breaks. Because they are upset, and it’s too late for you to be able to fix it, because suddenly their agitation is so very visible. They say your tone is aggressive, and you cannot for the life of you figure out what that means, because you weren’t trying to be. How can you be acting aggressively when you wanted nothing more than to explain to them the thoughts behind a fictional character’s actions?

And then, worst of all, the hardest punch to the heart– when you tell them that you really weren’t trying to be, they tell you that they have suspected, before now, that you struggle with tone. This instance had felt the most real, but they’d noticed this before.

Your heart shatters. You thought they understood you better than anyone else– and clearly they had, because they understood your intentions enough that this was the first time they had mentioned it– and yet they only suspected. Whilst you wrack your brain, unable to think of any time in your life you had ever spoken aggressively to your partner, it had happened enough times that they could call instances to mind within seconds. And the fact that they had only suspected, which implies that they were not, in fact, sure that you weren’t intending any aggression…

It is horrifically upsetting. It brings back memories of your parents berating you for having an attitude you did not know you had, and friends leaving you for your desire to always have the correct facts.

It makes you want to write an essay, both to get those feelings out, and because you are sure that no matter how specific you get with your examples, there are other autistics out there who have gone through the same thing.

And it hurts, almost, that the moment you open your laptop, the words start flowing. You do not have to think about them, or re-read what you have just written to prompt the next sentence. It all simply flows, because this is a struggle you know intimately, that you have known in every stage of your life, in so many different ways.

At least, you think, you are not alone. Even if you never speak, there are others out there experiencing this same confusion about how the minds of others work, and whilst you might never find an answer; might never be able to stop people assuming an intention behind your words that is never there if you do not explicitly say it– you are reading this, and we are in the same boat.