I’m here, I’m queer, and my joint pain is moderate to severe
Tag: chronic pain
Doctor: so what is your pain on a scale of 1-10
me: living with a debilitating chronic pain disorder has made it so that i am unable to quantify pain at the magnitude common people feel and thus I have no idea how to answer that
Doctor: …………..so, is that a 6?

{ID: tweet by @/Imani_Barbarin.
“Disabled representation is the present and the future.
We’re here. We’re moving as quickly as our mobility devices. and pain threshold, will allow.
Get used to it.”}
Cripple Punk Gothic
- “You are too young to be disabled,” they say. You age. “You are too young to be disabled,” they say. You age. “You are too young to be disabled,” they say. You have changed. They have not.
- You see a flight of stairs. Your friend insists there are only a few. You don’t see an end. You are tired. There are too many stairs. You don’t see an end.
- The door has an accessible entrance sticker. It is not accessible. You tell them so. They insist it is. You try to explain. They point to the sticker wordlessly.
- You tell people there is no cute for your disability. They whisper. Soon everyone is whispering. You do not know what they are saying but you hear the word ‘yoga’.
- You need an ice pack. You get one. You immediately need another. This has been happening all day. Or was it all year? You try to remember and you cannot think of a time you did not need an ice pack.
- You stand up from your wheelchair. People gasp. Your disability has magically disappeared. You sit back down. Your disability returns.
- You never notice people using canes. You get a cane. Suddenly you notice them. They’re everywhere. The number of canes grows. You chalk it up to your imagination, but you wonder if it really is growing. Soon, everyone will use canes.
- You do not see yourself in magazines. You do not see yourself in movies. You do not see yourself on tv. You do not see yourself in books. You start to fear that you do not exist.
- A person asks you what your disability is. “I don’t know,” you whisper, “no one knows.” They stare at you confused. You have never known.
- You sleep. You are more tired. You don’t sleep. You are more tired. You go out. You are more tired. You stay in. You are more tired. The moon waxes. You are more tired. The moon wanes. You are more tired. You think about whether these things are related. You are more tired.
[disclaimer: you don’t have to identify with all of these in order to reblog (in fact I don’t expect most people will) but please do identify with the cripple punk movement as a whole! or if you’re reblogging for a friend tag that you are and you’re able bodied. Also please tag for unreality and depersonalization if you can! Feel free to add on]
Celebrating the Bare Minimum: Why #Adulting is a Positive Thing
I read an article this week that basically scorned the whole #adulting tag as people wanting applause for doing what’s required of them as adults, and how they should get over themselves. Sure, I can understand how people might find it annoying, but I’d like to throw another light on it.
I’m an adult. I’m actually older than the article writer. I’ve been living out in the real world beyond my mother’s house since I was twenty-one. I rent a house. I have a car. I pay my bills. I’m also disabled. My partner of fifteen years is disabled, too.
My partner looks like an average woman in her early thirties. If people saw her out in public, they might question why we have a disabled placard for our car. If they saw her cane, they might immediately put it down to her being overweight. They can’t see the connective tissue disorder she has that makes her joints prone to dislocations, her balance problems, her low blood pressure that causes fainting spells or her chronic pain and fatigue.
My own disabilities are more subtle. Physically, I’m able. Unless I had a panic attack or meltdown in front of someone, or wore one of my neurodiversity pride t-shirts, they wouldn’t know that I’m living with autism, depression and severe anxiety. I pass well in casual interactions. I’m someone that people would assume had no reason to be unemployed, or to have failed to finish high school. But I’m on disability for very good reasons.
Living as we do, at home just about every day in a small village in a rural area, I imagine most people would expect our house to be perfect. After all, what else are we doing all day? I’ll tell you right now – it’s not. We have one big day a week when we go to town for shopping, medical appointments, and so on. It wipes my partner out for two days afterwards. By the end of the day, I’m exhausted, too. Interacting with people in crowded, noisy environments burns through my reserves a lot faster than people with less sensitive neurology. What we do on our ‘big day’ wouldn’t seem like much to most people. It’d be a day of errands that barely scratched the surface of their ability to cope. But when you’re starting with a finite amount of spoons, it takes its toll.
Once a month, we tend to do three things in our little village one after the other – visit the post office to collect our mail, take our bins to the local tip, and pay our rent. To do all three takes under an hour, but just about every time afterwards I say, “Well, yay for us for being fucking adults.” Why? Because it’s an achievement. Because even though I probably still have dishes in my sink and laundry in the hamper, we’ve got three things done that are vital to our survival.
I got told recently that I needed to lose some weight for my health. For several reasons, exercising at home is not an option, so my only choice was to leave the house. Given that I was essentially couch-bound by severe anxiety earlier this year, getting up and out has been a major challenge for me. Have I been doing it? Yes. How much weight have I lost? That’s not the point at all. This isn’t an inspiration porn story about a disabled person ‘overcoming’ their condition and riding a wave of success to able-parity. The thing that I celebrate is every time I put on my shoes and walk out the door despite the agoraphobia and anxiety waiting like wolves to bite me. I’m not overcoming anything. I’m gauging my level and weighing the cost versus benefit of doing something. And the days I don’t walk out that door? That’s fine. I’ve learned to accept that every day is different, and that some days I’m more capable than others of doing things.
For those who might think, oh, well the article writer didn’t mean people like you, she meant normal people, let me stop you right there. A big portion of the population has a disability. Sometimes it’s obvious, but a lot of the time, it really isn’t, and if you aren’t disabled right now, there’s a good chance you will be by old age. The great thing about the #adulting hashtag is that it’s about celebrating the little victories. It’s about giving yourself a high five for doing something difficult or unpleasant that you need to do for some reason or another. In a world that glorifies high successes but belittles everyday ones, it’s a breath of fresh air. I don’t think anyone who uses #adulting does it without a little dash of self-mockery, but that doesn’t mean it deserves to be labelled as worthless, either.
So, the next time you see a tweet or a post from someone celebrating the bare minimum, remember – you don’t know what it’s really like for them. They could be dealing with chronic pain, mental health issues, stress, grief, debt, or a toxic home or work life. They could be straining under a heavy course load, or struggling to find their direction in life. They could be sad, or lonely, or bored, and using the #adulting tag could be their way of cheering themselves up. Without being in their shoes, you really can’t tell. Sometimes, success is nailing a job interview, beating your personal best time, passing an exam or finding a partner, and sometimes, it’s achieving pants. Celebrating the latter doesn’t devalue the former, it just makes the world slightly less full of self-hatred, and for those of us who struggle to achieve the little things, it’s really fucking important on the path to self-acceptance. So, scroll past or block the #adulting tag if it annoys you, but don’t shit on those of us who choose to use it. A lot of us are shat on enough already.
I have a really exciting Spoonie Living announcement for y’all! When I started on my 6-month medical leave from work, one of my goals was to create a zine for new spoonies, to help them hit the ground running as they begin their chronic illness experience. I’m calling it Chronically Badass, and it’s finally done!
Here’s what I cover inside:
- Spoon theory
- Getting answers
- Working with doctors
- Work & school
- Friends & family
- Reactions
- Mental health
- Coping strategies
- Online communities
- Mobility
It’s free for download right here (although you’re welcome to donate if you like), so be sure to check it out!
Please also reblog and spread the word so others can find and benefit from this zine.
this zine sounds so awesome! i really wanna read it!
attn feralismyheart
Wicked excited about this zine!!! Also, such a great name for the zine!
Chronically ill Steve Rogers
(The images in this should be collapsed to begin with because, well, one of them is a plate of raw meat that Steve is presumably eating for breakfast. The last image is a gif. Contains discussion of illness, treatments, ableism and eugenics. I should point out…
The one thing I think I would argue differently would be to view a lot of those things as connected rather than separate. E.g, scarlet fever that developed into rheumatic fever, which then caused the heart problems (rather than heart problems PLUS scarlet fever and rheumatic fever separately). My grandfather was kept out of WWII for just that reason (heart problems resulting from scarlet fever/rheumatic fever) and it definitely contributed to his early death at the age of 62.
The other thing is that I don’t know about the expanded list- the only thing I ever paid close attention to was the doctor’s form in CA1, because I was writing a fic about it. Wherever it came from, I am side-eying the prop department because they’re kind of gilding the lily. Probably a product of not being used to how incredibly fragile life prior to antibiotics was (and so many of the other things they enable, like modern surgery).
Reblogging with this comment, because while the original meta is very good this comment is important because it highlights what tends to get overlooked about complex multiple medical conditions – they interact, they cascade, they cause other problems. So you have Steve taking asprin for one condition which causes/exacerbates ulcers, which then leads to the aenemia. You have the asthma leaving him open for respiratory infections. You have immune and vitamin deficiencies leaving him vulnerable to everything going around, and you have his body working double time trying to fix all the leaks. He’d be sick, and sicker than most, all the time. He’d be tired all the time. He’d be in pain, all the time. He’d have a poor appetite, and a temperamental gut as for what foods he could tolerate when he could eat. And that’s not even touching on the half of it.



