one of the worst parts of chronic illness is not being able to keep up with personal hygiene and feeling utterly disgusted with yourself but knowing nothing will change
Words and phrases I used before just do not cover these new chronic illness and disability sensations.
Explaining to doctors aside, because they need specifics and concrete examples and I end up talking to them in exhausting paragraphs and lists, I still want to have casual conversations with people who know and care about me. Who ask how I’m doing.
I need shorthand for recurring weirdness. So I burble something and if it sticks? Woo hoo! ¡Vocabulario!
I tell friends, “The bottom fell out,” when my body has pulled the energy plug on my brain and I am powering down right now. Probably gonna sleep? Right here. Wherever that is.
I use “skittles everywhere,” as a quick summary of ‘yes, I had my thoughts together and it was a pretty good day, but I got confused about something suddenly–maybe it was an emotional hit? maybe a stress situation?’–and my thoughts scattered like I dropped a whole bowl of candies and no, I cannot do anything useful about it; I am gonna stand here and blink at this debris field for a bit cause I have completely forgotten what I was doing.’ It’s kinda like “the bottom fell out” but more about thoughts and not so much about energy.
There’s words I picked up online in disability spaces like “spoons,” “flares,” “scrombled,” and “potsie.” (More about the legit joys of online community later.)
And then there’s using words that everyone uses, but not how everyone uses. My energy is fragile today. My thoughts are just a crust, so I don’t trust them to last. Oops, yeah. Fell through. Now ham-brain.
And it’s communicating, but quick and kinda surface level.
Like, we all know “pins and needles” if, say, your foot falls asleep. But there’s no cultural touchstone for, “my circulation is very poor today, so the weight of my blood is pooling in my lower limbs and I can literally feel myself getting dumber the longer I stand up because my brain is not getting enough oxygenated blood right now and it is kinda like drowning, yet there’s no sense of breathing urgency or air hunger just now, but that part will be happening shortly because my heart rate is climbing and I’m starting to prickle with sweat.”
So I just tell my loved ones, “Feelin’ potsie,” and they cut me some slack. And find me a chair. And that’s good enough for now.
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Being able to communicate with other people keeps me from despair, honestly. I recommend building your own language without shame.
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Seems like something we should all know.
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Disability happens to people without our control or consent. Every single disabled person has strong feelings about their own situation and I would not presume to talk about anyone’s thoughts but my own. But none of us chose to do life on hardmode, so if the world could listen this month, there’s a lot to say.
Reminder that if you haven’t deep cleaned your household mobility aids in awhile, you should go do that!!
Recently slipped getting out the shower bc the handhold I use had come loose due to limescale build up (it’s one that’s held on with suction cups). It’s so easy to forget about the things that are “permanent” features of the house, but they need care and maintenance too!
it’s really hard to explain to people what it’s like when over and over again your test results are normal but you’ve been sick for weeks, months, years. it’s so frustrating to watch your life slip by without getting answers, even sometimes when you have the most well meaning and competent of doctors.
when you have something like severe chronic fatigue, normal test results can become a letdown, another thing ruled out but not feeling any closer to understanding what’s really going on with your body. normal test results, most of the time, don’t feel like a relief to me but instead a sign that I have to advocate for myself and dig even deeper, reminding my doctors repeatedly that even if it doesn’t show up for them, my symptoms are still happening, are still real, that I need them to please, keep looking.
Patient: *has a bunch of different symptoms without a clear cause*
Doctors on medical shows: right I’m ordering every single test or scan available, I want a specialist from every department paged to take a look at this case and I want this group of interns looking into every possible rare disease that this patient might have. We won’t let this patient leave until we’ve gone above and beyond to help them. Let’s go people!
Doctors in real life: lol idk the three basic blood tests I did came back normal so it’s probably just in your head or something.
Y'know people became INSTANTLY less curious and invasive about my disability as soon as I had my crutches painted.
Once there was no more medical stickers all over them and the crutches were now a matte pink instead of hospital metallic, there were no more questions about “what happened???” Or “I hope you feel better soon”. And I think I know why…
When people see crutches that look metallic and have stickers on them, they think you’ve just gotten out of the hospital and that this is some new development (maybe a sport™️ injury or something) but with customized or non standard medical aides, it looks like something more permanent…
And that makes them uncomfortable.
The permanence of a disability, something that won’t go away, weakness that won’t go away, and knowing that it could happen to them as well. Not to mention that no one is taught how to interact with people with disabilities that are permanent (I might talk about non permanent disabilities at another point, but that’s not important here) there only people that they’re taught to interact with who have permanent disabilities are the elderly or children who are terminal, and they are extra nice to them and expect them to die at any time. But they don’t know how to handle someone who has a permanent disability and aren’t going to die any time soon.
People still stare at me. But people aren’t willing to interact with me about my disability. Which is actually sort of sad. When I got them painted, I was so proud of my matte pink crutches, I was wanting to hear compliments from people who know me, or even strangers! This whole time, I’ve only received one compliment on my crutches, and I believe it’s because the other person also has a disability.
If you’re not disabled, yeah, we don’t want you all up in our business about our disabilities, but it’s totally okay to compliment us on our medical equipment and aides and stuff. Don’t just ignore us
disabled isn’t a bad word. i can’t stand when able-bodied people say “stop bringing yourself down. i’m not going to tolerate your negative self talk”
me saying i’m disabled isn’t negative self talk. it’s just a true statement. and it’s neutral.
like i once had someone say “i wouldn’t say you’re disabled” like dude i can’t stand in the shower without nearly fainting. i can’t even get out of bed most days. i have to sit down when i brush my teeth. i had to drop out of high school because i couldn’t physically endure it. i am disabled. that is not your truth to decide. it’s my reality.
able-bodied people do not decide how you should or should not feel about your disability. they don’t decide how or whether you talk about it. it is your disability. it is a part of your life, and it sucks a lot of the time but it’s still a true statement. it impacts our everyday lives. they can’t shut down your troubles or dismiss your reality like it’s not real when the world is built in their favor.
