Normal Illnesses Only Beyond This Point
If I say, "I'm not feeling well," and it's disability-related, I feel like I'm lying. Somewhere along the way, I got convinced that only "normal" illness is real.
I'm not allowed to say "I'm not feeling well" if I'm overloaded from socializing all day, because most people would feel fine. I'm not allowed to say "I'm not feeling well" because it's cold and the cold makes me tired, or because it's hot and I can't stand the feeling of being sweaty. "I'm not feeling well" is inappropriate to describe the overload caused by unexpected things, and the way the world seems distant and incomprehensible and I just want to find a corner and curl up in it.
"I'm not feeling well" is for having the flu or food poisoning or strep throat, or something else normal. Maybe if you stretch it, it's for migraine headaches and out-of-whack blood sugar. But it's not for autistic overload. Never. Because autistic overload isn't real. You should just work through it, push yourself harder, keep going. I'm not breaking out in spots, I don't have a temperature, I don't need a doctor, I'm not having seizures. Therefore it can't be real.
I stayed home from work today because I'm stressed out. I work at the technology center now, putting together books for people who need them in audio format. Scan, edit, text-to-speech. I was supposed to be there for three hours today. Yesterday I went to bed at 11 p.m. to be up on time for my 9:30 class... I couldn't get out of bed. I couldn't figure out how to move. I finally dragged myself out at 11 a.m. after twelve hours of sleep, and it took me two hours to get myself showered and dressed and get the cats their food and their clean litter box. I kept getting stuck in the middle of doing things. I missed two classes. And I called in to work. It took me a while to figure out how to call in to work. I had to call disability services and get transferred because it seemed too complex to figure out where I had written down my boss's phone number. She was really nice about it. I just said, "I'm not feeling well." It was the truth. And I feel like I lied.
After a while, if you get stressed enough and you're autistic, it starts to get harder and harder to figure out what to do next, even how to move. You can't do things that take a lot of thinking. It doesn't matter if they're fun things or not. When I'm kind of stuck like that, I can't play computer games because it takes too much thinking--I'd just stare at the screen and kill my character repeatedly. Crochet means I have to round up my supplies. It's a little easier. I'm kind of surprised that I managed to type this post, honestly, but typing is pretty much automatic. Thankfully.
Why are you only allowed to be sick if it's the kind of sick that other people understand? I remember being a teenager, and my grandmother wouldn't believe me when I said I was having my period and couldn't come over to her house. (I love my grandmother. I wanted to go. But it's hard to go somewhere when you can't get out of your bed.) She didn't believe me because she'd never had bad periods herself. She thought that my parents were making excuses to keep me from coming to see her.
One of the most frustrating parts of having to live in a world with ablist prejudice in it, is that you start to pick up that prejudice and use it against yourself. When I say I'm not feeling well because I'm autistic and my brain has ground to a halt, there's this part of me that's just saying, "You need to work harder. You're being lazy. You're taking advantage of these good people. Come on, this is easy. Stop being so lazy. You're just pretending. This isn't real. You aren't really tired. You just want a day off to bum around. You had enough sleep last night, so you can't be tired. You're just lazy. If you were a good person, you would have gotten out of bed and gotten ready in half an hour and been at school and done everything you were supposed to do, but you're not a good person. You're taking advantage of the kindness of others because you just want to be lazy."
That's what the world tells me and that's what I tell myself. Every time I slow down, every time I don't do something that a NT in my place could do, every time I pass up an opportunity to help someone or do something useful, because I know I would just get tired and let people down... every time that happens, I think, "I'm so lazy." Yesterday I saw a little black stray cat on campus. I know we need a campus cats program, to neuter and monitor the strays so that they don't become a nuisance and can live happy and healthy lives instead of dying young and having litter after litter of doomed feral kittens. And I also know that I can't start one, because I don't have the time. So every time I do something relaxing, something I want to do, I feel guilty because I should be out there helping the stray cats, or at work, or making another afghan, even though arguably, "slacking off" is the only way I manage to stay sane enough to do anything useful at all. Any time I relax, it comes back. Lazy, lazy, lazy. Constantly.
I wonder how many other people with disabilities, especially invisible ones, struggle with this. How do you know when you're being truly lazy and how do you know when you're being wise enough to say you can't do any more? You can't use the NT standards because they don't apply to you. If you're NT, you know you need to rest if you have the flu or if you have been working hard all day. But having been in an office full of people, or having to wait unexpectedly long at the pharmacy, or having to deal with the feeling of a polyester scarf, isn't something that even comes into the picture. It's a minor annoyance; it shouldn't shut you down. If it does, you're a whiny, lazy coward who's looking for an excuse. Except... if you're autistic, maybe it's a legitimate thing to say "I'm not feeling well" when the polyester scarf and people and unexpected events are making it hard for you to collect your wits well enough to take care of yourself. Maybe it's not really lazy to climb back into bed and huddle under your weighted blanket. But try telling that to your feelings, which have grown up under the dominion of the idea that there's only one right way to live, only one definition of "I'm not feeling well" that matters.
I'm not allowed to say "I'm not feeling well" if I'm overloaded from socializing all day, because most people would feel fine. I'm not allowed to say "I'm not feeling well" because it's cold and the cold makes me tired, or because it's hot and I can't stand the feeling of being sweaty. "I'm not feeling well" is inappropriate to describe the overload caused by unexpected things, and the way the world seems distant and incomprehensible and I just want to find a corner and curl up in it.
"I'm not feeling well" is for having the flu or food poisoning or strep throat, or something else normal. Maybe if you stretch it, it's for migraine headaches and out-of-whack blood sugar. But it's not for autistic overload. Never. Because autistic overload isn't real. You should just work through it, push yourself harder, keep going. I'm not breaking out in spots, I don't have a temperature, I don't need a doctor, I'm not having seizures. Therefore it can't be real.
I stayed home from work today because I'm stressed out. I work at the technology center now, putting together books for people who need them in audio format. Scan, edit, text-to-speech. I was supposed to be there for three hours today. Yesterday I went to bed at 11 p.m. to be up on time for my 9:30 class... I couldn't get out of bed. I couldn't figure out how to move. I finally dragged myself out at 11 a.m. after twelve hours of sleep, and it took me two hours to get myself showered and dressed and get the cats their food and their clean litter box. I kept getting stuck in the middle of doing things. I missed two classes. And I called in to work. It took me a while to figure out how to call in to work. I had to call disability services and get transferred because it seemed too complex to figure out where I had written down my boss's phone number. She was really nice about it. I just said, "I'm not feeling well." It was the truth. And I feel like I lied.
After a while, if you get stressed enough and you're autistic, it starts to get harder and harder to figure out what to do next, even how to move. You can't do things that take a lot of thinking. It doesn't matter if they're fun things or not. When I'm kind of stuck like that, I can't play computer games because it takes too much thinking--I'd just stare at the screen and kill my character repeatedly. Crochet means I have to round up my supplies. It's a little easier. I'm kind of surprised that I managed to type this post, honestly, but typing is pretty much automatic. Thankfully.
Why are you only allowed to be sick if it's the kind of sick that other people understand? I remember being a teenager, and my grandmother wouldn't believe me when I said I was having my period and couldn't come over to her house. (I love my grandmother. I wanted to go. But it's hard to go somewhere when you can't get out of your bed.) She didn't believe me because she'd never had bad periods herself. She thought that my parents were making excuses to keep me from coming to see her.
One of the most frustrating parts of having to live in a world with ablist prejudice in it, is that you start to pick up that prejudice and use it against yourself. When I say I'm not feeling well because I'm autistic and my brain has ground to a halt, there's this part of me that's just saying, "You need to work harder. You're being lazy. You're taking advantage of these good people. Come on, this is easy. Stop being so lazy. You're just pretending. This isn't real. You aren't really tired. You just want a day off to bum around. You had enough sleep last night, so you can't be tired. You're just lazy. If you were a good person, you would have gotten out of bed and gotten ready in half an hour and been at school and done everything you were supposed to do, but you're not a good person. You're taking advantage of the kindness of others because you just want to be lazy."
That's what the world tells me and that's what I tell myself. Every time I slow down, every time I don't do something that a NT in my place could do, every time I pass up an opportunity to help someone or do something useful, because I know I would just get tired and let people down... every time that happens, I think, "I'm so lazy." Yesterday I saw a little black stray cat on campus. I know we need a campus cats program, to neuter and monitor the strays so that they don't become a nuisance and can live happy and healthy lives instead of dying young and having litter after litter of doomed feral kittens. And I also know that I can't start one, because I don't have the time. So every time I do something relaxing, something I want to do, I feel guilty because I should be out there helping the stray cats, or at work, or making another afghan, even though arguably, "slacking off" is the only way I manage to stay sane enough to do anything useful at all. Any time I relax, it comes back. Lazy, lazy, lazy. Constantly.
I wonder how many other people with disabilities, especially invisible ones, struggle with this. How do you know when you're being truly lazy and how do you know when you're being wise enough to say you can't do any more? You can't use the NT standards because they don't apply to you. If you're NT, you know you need to rest if you have the flu or if you have been working hard all day. But having been in an office full of people, or having to wait unexpectedly long at the pharmacy, or having to deal with the feeling of a polyester scarf, isn't something that even comes into the picture. It's a minor annoyance; it shouldn't shut you down. If it does, you're a whiny, lazy coward who's looking for an excuse. Except... if you're autistic, maybe it's a legitimate thing to say "I'm not feeling well" when the polyester scarf and people and unexpected events are making it hard for you to collect your wits well enough to take care of yourself. Maybe it's not really lazy to climb back into bed and huddle under your weighted blanket. But try telling that to your feelings, which have grown up under the dominion of the idea that there's only one right way to live, only one definition of "I'm not feeling well" that matters.