#chronic illness community

[matchakuracat]

Being asked to rate your pain on a scale as someone who has had chronic pain for several years is so difficult. Like how am I supposed to rate the pain I am experiencing from 1-10 when I have no idea what it feels like to not be in pain. Like what is 0? what is 1?? what is even 10???? What am I comparing it to???? My 5 can be someone else's 10 and their 10 can be someone else's 2, and how is a doctor or anyone else for that matter supposed to tell the difference? Maybe it's because I'm autistic and I'm just overthinking it but it literally makes no sense to me.

[calmmyfears]

hi, if you are struggling with not knowing who to be or what to do with your life this year just like me. i want you to know that it'll be alright, we will figure it out along the way. breathe deep and take my hand, we are going places you've never imagined. the world is waiting for us and we will get there in our own time, slow but steady. one foot in front of the other with kindness and patience in our hearts. we're not lost, we're on our way. 🤍

[mandana-the-service-pup]

Denying a patient the right to a diagnosis just bc the disorder you suspect they have doesn’t have a cure is ableist and abuse of power.

Patients have the right to know what is going on with their body. If you aren’t prepared to help them, there is an entire community who can provide them with the knowledge & skills you lack (symptom management, clinical trials, latest research, emotional support, list of specialists and treatment options, etc).

The least you can do is give them the diagnosis.

[chronicsymptomsyndrome]

I follow tons of disability/chronic illness/mental health tags and I keep seeing memes or infographics without alt text or image IDs. This is not okay for content of any subject matter, but its beyond ridiculous for these spaces in particular. You can’t call yourself an advocate if you are declining to use accessibility tools like this. There are absolutely no excuses, especially with the technologies we have now. Most devices can read and copy the text out of any image, for example.

Basically if it’s not worth including everyone, it’s not worth posting. Make it accessible or don’t post it. Thank you

[moon-blush]

I'm going through a medical emergency that's putting me out of work till the middle of February at the best, till March at the worst. It's two operations and a surgery.

I'm so stressed about it. I'm not rich, I don't have much savings and what I do have has been put towards my hospital travel/bills that my insurance won't cover.

I've gotta come up with 1,800 for my bills so I can at least keep my apartment, my car, and phone on, otherwise I'll lose both and I just don't know what to do. I know this is a stressful time for everyone and I hate that I have to post this but if you can help with anything, please do. I really need it. I'm practically begging. Please friends, help me if u can, I can't be homeless here at -40 temps on top of recovering.

0/1800

$moonblushy

I also have venmo if that's easier, shoot me a message.

[plushies-and-petrichor]

[delusioncolor]

🚨 PLEASE help a disabled autistic system 🚨

we're in need of. . .

bills (water, gas, electric, etc)

medical license

bulk tylenol + vitamins

clothes in general (we share clothes with our mother mostly because we're similar size but we have only a couple things of our own (other than underwear thankfully))

compression gear

disinfectant wipes

neck pain aids (like accu-pressure foam block and neck pillow)

rollator accessories

sensory friendly lighting

various braces for the body

various ice packs

our current goal is $500. please share this.

p/yp@l: @beesanonymous

c/sh@pp: $queerdisability

ko/fi: @autibility

[my-brain-is-soup]

[patchyourbrokenwings]

Just because you've gotten really good at ignoring the pain doesn't mean the pain has gone away. I know how much it hurts, but please allow yourself to feel (in a way that isn't harmful!). Your body sends you signals and it is important to remain aware of what these can mean. Even if your body has been sick for a long time, if something doesn't feel right it usually is.

[neuroticboyfriend]

do you think it'd be ethical for me to go to One (1) 5 hour long indoor pride event? as long as I wear a mask (hopefully kn95) and 2 rapid tests beforehand (idk if I can get a PCR before, but I will PCR after)?

i feel like the answer is probably no but... itd help to get input from yall since ik many of you are covid conscious. its also risky for me bc i just got over an infection and i kinda have another chronic infection.. hhh. i want to celebrate too....

[obfuscated-abstract]

Table of Contents

Intro post with some frequently asked questions (I figured it makes more sense for the ToC to be pinned)

Send me any medical literature you want summarised or made accessible so that I can expand the list!

All summaries

All full texts

Chronic Pain

Ehlers-Danlos Syndrome (EDS)

Functional Neurological Disorder (FND)

Hypermobility Spectrum Disorder (HSD) -- formerly known as Hypermobility Syndrome (HMS) and Joint Hypermobility Syndrome (JHS)

Postural Orthostatic Tachycardia Syndrome (POTS)

[calmmyfears]

new year, still chronically ill 😴

[mandana-the-service-pup]

A friendly reminder to my chronically ill buddies: READ YOUR RX INSERTS!

I know you’ve been taking that Rx for years but every time you get a new medication or are having weird symptoms please look over your Rx inserts. It’s so easy to forget super vital pieces of information about a medication after you’ve been taking it. Like maybe your new symptoms are on the side effects list. Maybe you shouldn’t be taking that medication with food afterall. Maybe you are supposed to be monitoring certain blood tests regularly.

I know you’ve got a lot going on and brain fog on top of it but no body is going to look out for these things except for you 🫶

[skelebellie]

how many low spoon days must we endure before we turn to knives

[riotclitshave]

[life-as-a-gummy-bear]

Please check out the pinned version of my gofundme post and donate and/or share as widely as you can please! I also, now, have the link in my bio. Seriously, any amount you can donate helps, any sharing helps, even across platforms.