Me explaining my grandma and mom that all the health problems since childhood were not “early-onset arthritis,” “carpel tunnel,” “just recurrent hernias,” “diverticulitis” or “crooked teeth” but instead all part of a genetically inherited disease like:

we should stop talking abt hEDS ALL THE FUCKING TIME AND ACTUALLY START TALKING AND RECOGNIZING OTHER EDS TYPES. I NEVER SEE ANYTHING ABT MY OWN TYPE, vEDS!!! ITS ALWAYS JUST hEDS AND ANYTHING ABT RARE DISEASES IS ABT hEDS WHEN IT ISNT FUCKING RARE

so many. nondisabled people. call things i do a personal inconvenience to them. whether it is thing i do as accessability and accommodation. or because i struggle with doing thing exactly because of disability.

personal inconvenience. to them. always center them nondisabled selves in my disabled story. everything is about them. i’m not considerate of them.

and if i explain. that it is accommodations. or it is struggle. they get annoyed. because “everything about you is because of disability.” because say what i do makes me unlikable and difficult to be around. they don’t say it directly but i know they mean “your disability too difficult and inconvenient for me.”

even though nondisabled people. only a guest in my life. yet they make everything. center them.

nondisabled people. don’t know how to decenter self. even if they are expert in social justice or social theories. still don’t know how to decenter themselves. when it comes to disability.

difficult for you. welcome to my life. where everything difficult.

further solidifies my belief that. nondisabled people wouldn’t be able to survive one day in my disabled body mond.

How it started

Doctor Who season starts on the 12th of November to 1st of December on my twitch channel, twitch.tv/pandagrenade87

Does anyone know a good brand that sells fingerless compression gloves? I have hEDS and I am looking for something to help with the pain in my hands when I sew or embroider.

to our friends with chronic pain:

i hope your pain is manageable today! i hope that you’re able to do what you want to do, and i hope you enjoy doing it

and if you’re having a bad pain day: i hope you can get some rest and take it easy, and i hope tomorrow will be better!

you’re so amazing and strong, even if you don’t feel like it (yes, even if others tell you that you’re not!)

we love you! /p

-Turnip☀️🐸

Add another tally to the “accidentally gave a healthy person a panic attack by treating a dislocation as an (admittedly fairly severe) inconvenience instead of an emergency” count.

I'm reaching out to my fellow spoonies and chronically ill friends. I'm looking for a wheelchair, maybe one of y'all has one you don't need anymore because you got a new one or a motorized one. I just need a manual one, currently my shoulders are still good enough to self propel. I'm totally willing to pay for it but I don't have much because I'm unemployed because of my health issues. Please message me if you have one or know somewhere I can get one

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

If anyone can offer any advice at all I would be grateful enough to lay down my life for you, how do yall with chronic illness get peace? I recently received a hEDS diagnosis and am actively working through stomach issues and just. cannot get it off my mind and it's making work just that much harder on me bc I feel so much more stressed by it all than normal

Is the cure to eds literally just very very slowly getting buff because that's insane to me

okay fair but have you considered that in 99% of cases people post about the disease they themselves have, not others? as in, heds is the most common eds, so there will inherently be more people posting about it than posting about other kinds of eds which are much more rare, its just bound to be that way. like how there will inherently be more posting about more common mental illnesses than rarer ones, bc theres less ppl who have it to post abt it. all my sympathy to you and ppl who have other kids of eds, hope youre hanging in there and finding ways to cope, but outside of basic "awareness raising" on tumblr which frankly doesnt do that much irl and noone has to do unless they call themselves an advocate or educator on here, ive rly not got much to say abt what those types are like

dude. yes i know people post about their own illness, thats okay. but, i wasnt upset about that and im sorry if i worded that weird. but listen, im VERY frustrated about part of the hEDS community (not all) butting in conversations about rare conditions, LIKE vEDS AND MANY OTHERS. im mad because everything seems to be about hEDS when it really isnt. hEDS isnt a rare disease and im sick and tired of people acting like it is and getting into topics about rare diseases or in messages about rare disease appreciation ive seen many ppl be like "what about hEDS or (other common condition or atleast well known ones)" like no your condition is not the same as many other rare conditions that me and many others have. i have nothing against ppl with hEDS but yk theres a small part of the community that just always seems to do that. basically. i get hEDS is the common type of eds and people will post about their conditions but please stop getting into conversations when they arent about hEDS, especially ones abt rare conditions. thx. also the messages ive made were worded wrong so i am very sorry abt that

TRULY INCREDIBLE HOW I CAN HAVE THE "am i faking it?" THOUGHTS EVEN WHEN I CAN'T STAND LONG ENOUGH TO WASH A PLATE,

Well, it certainly has been a journey this past 4 years.

If you could help me share or spread this, it would be appreciated.

Today I made my appointment for my treatments starting on the 11th. It's either this or surgery (some of you already may this know this story so sorry for repetitive). But enough is enough.

My collarbones are dislodged, they have been for a while and the more I see the symptoms the more I realize this is likely what's been so fucking with me and why no amount of PT, steroids, massage, dry needling, trigger point injections or you name it (I probably have tried it). I can't fall asleep because of this and I can tell they're poking on a nerve, and sometimes I can't breathe when I move too much the "wrong way".

This past two months have been great. By reconnecting with my friends I have discovered a new will to live, however that can only take me so far emotionally. I need address the structural issues with my body.

I want to be able to sleep without worrying about my bones stabbing my arteries or nerves without feeling like my arm is going to fall off. To shower without help.

This is my Hail Mary. Anything from this will be used to finance Prolo/Prp, moving out, PT and seeing a cervical chiro (they are less abrupt on the joints).