#my chronic life

[chronicquotes]

[chronically-autistic-dinosaur]

[colourmeastonished]

Body swap movie where one of them has invisible disabilities and when the other one lands in their body they immediately collapse catatonic on the floor from the pain and fatigue and the first one is like 'oh damn guess I don't have to worry that I'm faking it anymore'

[s-ccaam-era-crepe]

i think everyone who's ever had migraines should be financially compensated forever btw

[inkskinned]

the thing about art is that it was always supposed to be about us, about the human-ness of us, the impossible and beautiful reality that we (for centuries) have stood still, transfixed by music. that we can close our eyes and cry about the same book passage; the events of which aren't real and never happened. theatre in shakespeare's time was as real as it is now; we all laugh at the same cue (pursued by bear), separated hundreds of years apart.

three years ago my housemates were jamming outdoors, just messing around with their instruments, mostly just making noise. our neighbors - shy, cautious, a little sheepish - sat down and started playing. i don't really know how it happened; i was somehow in charge of dancing, barefoot and laughing - but i looked up, and our yard was full of people. kids stacked on the shoulders of parents. old couples holding hands. someone had brought sidewalk chalk; our front walk became a riot of color. someone ran in with a flute and played the most astounding solo i've ever heard in my life, upright and wiggling, skipping as she did so. she only paused because the violin player was kicking his heels up and she was laughing too hard to continue.

two weeks ago my friend and i met in the basement of her apartment complex so she could work out a piece of choreography. we have a language barrier - i'm not as good at ASL as i'd like to be (i'm still learning!) so we communicate mostly through the notes app and this strange secret language of dancers - we have the same movement vocabulary. the two of us cracking jokes at each other, giggling. there were kids in the basement too, who had been playing soccer until we took up the far corner of the room. one by one they made their slow way over like feral cats - they laid down, belly-flat against the floor, just watching. my friend and i were not in tutus - we were in slouchy shirts and leggings and socks. nothing fancy. but when i asked the kids would you like to dance too? they were immediately on their feet and spinning. i love when people dance with abandon, the wild and leggy fervor of childhood. i think it is gorgeous.

their adults showed up eventually, and a few of them said hey, let's not bother the nice ladies. but they weren't bothering us, they were just having fun - so. a few of the adults started dancing awkwardly along, and then most of the adults. someone brought down a better sound system. someone opened a watermelon and started handing out slices. it was 8 PM on a tuesday and nothing about that day was particularly special; we might as well party.

one time i hosted a free "paint along party" and about 20 adults worked quietly while i taught them how to paint nessie. one time i taught community dance classes and so many people showed up we had to move the whole thing outside. we used chairs and coatracks to balance. one time i showed up to a random band playing in a random location, and the whole thing got packed so quickly we had to open every door and window in the place.

i don't think i can tell you how much people want to be making art and engaging with art. they want to, desperately. so many people would be stunning artists, but they are lied to and told from a very young age that art only matters if it is planned, purposeful, beautiful. that if you have an idea, you need to be able to express it perfectly. this is not true. you don't get only 1 chance to communicate. you can spend a lifetime trying to display exactly 1 thing you can never quite language. you can just express the "!!??!!!"-ing-ness of being alive; that is something none of us really have a full grasp on creating. and even when we can't make what we want - god, it feels fucking good to try. and even just enjoying other artists - art inherently rewards the act of participating.

i wasn't raised wealthy. whenever i make a post about art, someone inevitably says something along the lines of well some of us aren't that lucky. i am not lucky; i am dedicated. i have a chronic condition, my hands are constantly in pain. i am not neurotypical, nor was i raised safe. i worked 5-7 jobs while some of these memories happened. i chose art because it mattered to me more than anything on this fucking planet - i would work 80 hours a week just so i could afford to write in 3 of them.

and i am still telling you - if you are called to make art, you are called to the part of you that is human. you do not have to be good at it. you do not have to have enormous amounts of privilege. you can just... give yourself permission. you can just say i'm going to make something now and then - go out and make it. raquel it won't be good though that is okay, i don't make good things every time either. besides. who decides what good even is?

you weren't called to make something because you wanted it to be good, you were called to make something because it is a basic instinct. you were taught to judge its worth and over-value perfection. you are doing something impossible. a god's ability: from nothing springs creation.

a few months ago i found a piece of sidewalk chalk and started drawing. within an hour i had somehow collected a small classroom of young children. their adults often brought their own chalk. i looked up and about fifteen families had joined me from around the block. we drew scrangly unicorns and messed up flowers and one girl asked me to draw charizard. i am not good at drawing. i basically drew an orb with wings. you would have thought i drew her the mona lisa. she dragged her mother over and pointed and said look! look what she drew for me and, in the moment, i admit i flinched (sorry, i don't -). but the mother just grinned at me. he's beautiful. and then she sat down and started drawing.

someone took a picture of it. it was in the local newspaper. the summary underneath said joyful and spontaneous artwork from local artists springs up in public gallery. in the picture, a little girl covered in chalk dust has her head thrown back, delighted. laughing.

[andthebeanstalk]

Today my therapist introduced me to a concept surrounding disability that she called "hLep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you asked for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hLep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hLep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it reinforces the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hLeper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Edit: crediting my therapist by name with her permission - this term was coined by Nahime Aguirre Mtanous!

Edit again: I made an optional follow-up to this post after seeing the responses. Might help somebody. CW for me frankly talking about how dangerous hLep really is.

[araekniarchive]

@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

[bulldagger-bait]

I've always been curious to know this about the people around me. Most people have been in severe pain, but in my experience few have had what they would say is their 10/10 experience. I guess it's just something I find fascinating, as I had my 10/10 experience quite young and I sometimes forget that not everyone has. In my opinion it changes your relationship with pain and how you engage with it afterwards. If you answered yes, feel free to elaborate on your circumstances in the tags!

(reblog for a bigger sample size etc)

[poorly-drawn-mdzs]

Good Morning, World.

[First] Prev <–-> Next

[youngchronicpain]

It is okay to need pain medication to function with your chronic pain. It is okay. I promise. I know everywhere you turn pain medication is demonized. I know that it is scary to talk about. It is okay to be grateful that you have access to pain medication. Pain meds have greatly improved my quality of life and I wouldn't be able to live my life outside of my bed without them. And that's okay!!!

[thebibliosphere]

Ongoing MCAS recovery update:

Took a bite out of a gluten free chocolate cupcake and didn’t die 👍

[uncanny-tranny]

I think it would really benefit people to internalize that mental illnesses are often chronic and not acute. Some of us will never be able to jump the hurdle of managing illness, much less sustaining a sense of normalcy. Many of us will never "recover," will never manage symptoms, will never even come close to appearing normal - and this is for any condition, even the ones labeled as "simple" disorders or "easy-to-manage" disorders.

It isn't a failure if you cannot manage your symptoms. It isn't a moral failure, and you aren't an awful person. You are human. There's only so much you can do before recognizing that you cannot lift the world. Give yourself the space to be ill because, functionally, you are.

[800-dick-pics]

Help Me Get a Service Dog to Live a Better Life!!!

I have been waiting for years for and an opportunity like what I have just been given. I have been researching service dogs extensively for years, and now I have an opportunity to get a prospect for one…… but in 2 WEEKS! I need help funding the cost of the puppy as well as the flight ($2500 approx) to get across the country. While this has been on short notice please know that this has not been a rash impulse choice, this all has been in the making for sometime now, and there is already a dog picked out that is perfect for my needs. My community is ready and willing to support me through this process of training a service dog and think it could be one of the best things for my health.

Having a service dog would allow me to work a traditional job again, would allow me to have more freedom and autonomy, this is going to change my life in a very impactful way. I want to be able to leave my home without fear of passing out and falling, I want to be able to work again, I want to be able to get out and be a human being again, to finally have the ability to do things by and for myself!\ For the first time in a while I have hope for my future, hope that my quality of life can improve, hope to feel like me again.

Please if you can share and donate! This is vital to my health, my quality of life and future.

$2,600 GOAL!!!!!!!

CA: $sleepyhen

VN: wildwotko

Dm for Paypl

[fella-lovin-fella]

hey if you ever feel like you're faking your pain/mental illness/any symptoms, or if you feel like no one understands or believes you. i do. i believe you. i love you and i hope you do what you can to take care of yourself <3

[in-sufficientdata]

This can be a huge source of medical trauma and it's so cruel that it's being imposed on people by the medical establishment itself. How can they help but feel anything but helpless? There's no fighting that.

I can't help but think of this from my own perspective as a fibromyalgia patient who keeps having to fight being thought of as (or even being labeled as) drug-seeking.

I am literally just trying to live life closer to the standard that 'normal' people have every day.

Why is it in any way fair that most people are mostly pain-free and capable of doing the things they want to do, but I have to suffer with pain on a daily basis that is at minimum, on a very rare, very good day, at level 5?

Why is it when I report that my pain level is at level 7, 8, 9, I only get doctors side-eyeing me and explaining my OTC options?

I have had chronic pain since I was 8. I'm very fucking aware of my OTC options, so no thank you, doc.

And when I spend 20 minutes explaining in detail that my daily pain has noticeably increased and changed in quality since around January 1st, why should I have my PCP giggle at me every time I say that I need help with managing my pain and learning ways to deal with it?

It felt incredibly invalidating and I wish he would have said, look, I don't have the expertise to help you, so here's a referral to a pain specialist.

I only found out there was a such thing by trying to research the topic after this on my own!

So yeah, it's not just the insurance companies, it's the doctors, too.

It's almost like having a profit-motivated medical establishment hurts patients.

[invisibleoctopus]

chronic pain culture is not being able to relate to the "lets take ibuprofen together" meme because ibuprofen hasnt worked for your pain since you were like 10