To all my Disabled friends;

fakeclaiming yourself will only result in the further deterioration of your health

I was having a good run of things with my physical health and thought to myself, "Maybe I'm cured!/ was faking all along!" Only to overdo it, and now I am in a pain flare up thats gotten worse as I type this out because once more, I ignored my symptoms the first time and am FORCED to do nothing until I feel better.

Do not wait until your symptoms are the worst they possibly could be until you pay attention to them. You are only doing yourself a disservice

Hi. When I use my cane to assist me in something besides walking/standing please don't assume I will be "doing a trick" with it. I take pride and joy in how fucking boring and mundane I choose to make myself to you (abled people), I'm never going to be your entertainment. Stop assuming we exist to make you smile and clap like we're fucking animals at a zoo instead of people in pain. You want interesting? Ask me about tarantulas. The sheer number of instruments I play. Kanien'kehá:ka. My opinions on Frankenstein. My OUtFiT. There are way funner things about me than the stick I'm walking with because my body hurts all over all of the time.

Not to disability post on main or anything but I'm just about sick and fucking tired of so-called "medical professionals" who are supposedly "specialists" (i.e. rheumatologists, for example), thinking they can slap me with a myofascial pain syndrome/fibromyalgia/chronic fatigue/hypermobility diagnosis, tell me to stop eating gluten, and call that a done and dusted day on the job when those diagnoses don't even BEGIN to explain the majority of my symptoms.

What about the fact that I randomly run low-grade fevers with no evidence of other infections (flu/COVID/RSV), what about my positive ANA factor, what about my low igA levels, what about my chronic iron deficiency anemia, what about my MULTIPLE documented activated EBV infections that have damaged my spleen, what about the fact that I have no reflexes in my knees, I could literally keep fucking going.

I'm so fucking sorry that I'm a fat AFAB trans person with the kind of disabilities that land me in medical appointments multiple times a week, but a doctor who hasn't cracked a fucking textbook since 1997 does not know more about my condition than me, the person living with my symptoms 24/7. And quite frankly I'm not going to be jammed into a diagnosis like fibromyalgia which is the clinical equivalent of "fuck off and die" disorder and a classic excuse to just categorize and disregard patients with complex symptoms when doctors don't want to do their JOBS to figure out what's actually wrong. There is something wrong with my immune system and I need TREATMENT, not a convenient label to send me to my grave with. I refuse to be a docile "ideal patient" and I am not afraid to be a "doctor shopper" either, because what I think medical professionals forget is that Y'ALL work for ME and I CAN and WILL fire you if you're fucking useless.

DO. FUCKING. BETTER.

sometimes i wonder if i’ll ever come to terms with being disabled. i guess i’m still holding out hope that i can get better, at least for now. but it’s hard when you’re literally just standing there, holding a camera, and your hands are shaking and your head is swimming and you feel like if you don’t sit down right now you’re going to die. it’s really hard when i eat a regular meal and have weird coughing fits after that always bring me to the verge of throwing up. it’s so fucking hard when you’re just sitting down and you’re out of breath and you have a migraine from moving around just a little too much. and it’s so fucking frustrating because it wasn’t always like this. it’s only been a year since i’ve shown symptoms of dysautonomia and it’s been two since i got my worst case of covid. i’m so fucking sick of living like this. i want to go back.

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

At one point in history, I would have been sold to a freakshow. My scoliosis was so severe it was crushing my lungs and heart. I quite literally looked like the hunchback of Notre Dame. I'm thankful I was able to get surgery to correct it, but every day I live with the knowledge that at one point in time I would have been used as an object for the entertainment of others.

chronic pain vent sketch.

so far in my journey to understand why i’m always in pain :

• people watched me cry from pain, not being able to keep my eyes open, sweat and hyperventilate after less than 10 minutes on a training bicycle thing, and decided that there was nothing wrong with me at all. even when it took me 15 minutes to be able to sit/stand afterwards because i was about to throw up or pass out

• at least there’s nothing wrong with my heart

• a lady let me talk about why i think i might have heds and why i think i should get tested for it but did not actually listen to anything, looked at some points of the diagnosis (but not everything !!), and decided i was not even hypermobile (i would love to trust her and she might be right but she didn’t do the stuff correctly lmao)

• one doctor says i have orthostatic hypotension. another says i don’t have it. a third says i don’t have it but my tension is naturally quite low (does that mean hypotension or not ??)

• current explanations for my chronic pain that makes me need a cane are : i’m too tense (bc my body is reacting to the pain !), i don’t move enough (bc pain stops me from moving !), it’s psychological, it’s normal pain (???)

• things i should apparently do if i want to get better : do sports, go on a walk every day, do things even if they hurt, not use the lift at uni, not rely too much on my cane, do breathing exercises

being young and disabled really sucks. vent / rant

being a younger disabled / chronically ill person really, really sucks, honestly.

People don’t believe me when I say I’m in pain and can’t do things, people don’t believe me when I say what’s wrong. People don’t seem to want to help and it hurts.

it hurts knowing a lot of my friends very well will outlive me, with chronic illness and all. It hurts knowing they’re going to forget me or I’ll be a sob story or pity party or whatever.

I feel like I can barely take care of myself or enjoy things, honestly. I feel like I’m probably awful to be around, I’m always in pain and crabby because of it. I’m always tired and I’m always angry. I’m angry at the life that’s getting taken from me, I’m angry at the hobbies I lose, I’m angry that other people got to be healthy at first. I’m angry that I was born sickly, I’m angry that I know people who got a decade or three of being healthy and happy.

I wish I got to mourn without looking like I’m bitter or ungrateful.

My pre-paralysis vs post-paralysis art. The difference doesn't seem much but the latter took so much more time and effort.

Before I developed rheumatoid arthritis I could draw for twelve hours straight. This here has taken me twelve hours:

I no longer can do this. This much detail would now take me roughly 48 hours with far more breaks in-between.

Art has always been my outlet and way to express myself for almost twenty years. Disability has taken many things from me; my mobility, my stamina, my strength and so much more.

It is also gradually taking away my ability to create art the way I always used to. This to me is a genuine tragedy. I have a progressive illness that degenerates my joints and tissue over time. I am approaching Stage 3 arthritis and every flare worsens my mobility little by little. It deforms me more and more.

It hurts. Art is my most raw and naked language. I have Borderline and Narcissistic Personality Disorder, which both completely alter the way I experience and process emotion. Art has always been my medium of expression, my outlet for these painful emotions. A way to process everything that is going on within and around me. Trauma chnged me. Art helped me far more than anything else did when I was being abused.

I mourn what disability has taken away from me and will take away. Gradually losing my ability to draw is like slowly forgetting a language.

To my fellow disabled artists who have lost or are losing their ability to express themselves through art too: You are not alone. You are allowed to mourn and be angry about it. Your emotions and grief are not misplaced - on the contrary, it's perfectly reasonable.

Ableds will often say: "Don't let your disability stop you!!" But that's what disability does. It takes away many things in our lives; even for some life itself. That is reality. There is no denying it. We are allowed to grieve.

Really starting think need diapers. Having accidents almost every day Guess should be tell someone but so hard. So just keep wear same clothes have peed in over n over which prbly not good but so hard tell someone not cus embarrassed but severe communication issues. But thing with diapers is will forget change wear same one all day. Really wish had formal caregiver glad have mom and brother and Grammy but mom work lot , brother can't shower or change me, Grammy in hospital right now and when get out not sure she going be able shower n change me

I'm so fucking sick of feeling SICK EVERY TIME I EAT. IM SO FUCKING SICK OF BEING TOLD THAT ILL GET BETTER IF I FUCKING EXERCISE AND DRINK WATER WHEN THATS NOT HOW IT FUCKING WORKS. I am sixteen years old, this illness has put me in a wheelchair and I want to try to heal from a fucking eating disorder but this illness makes me feel sick every FUCKING TIME I EAT. MY BODY IS DOING NOTHING BUT WORK AGAINST ME WHILE IM TRYING TO NOT BREAKDOWN. I just want to be able to eat and I want food to stop being scary.

You know what? I hate how most people think I'm 100% dependant on my mobility aids. Sure I hobble around with my cane and scuttle on my crutches, but I'm not helpless. They're so surprised when they find out I don't use them at home, or that they can hurt as bad as the disability itself, or that my dependence on them is a fluid thing and changes day by day. We have this idea of how disabled people should be— bound to their aids, miserable, defenseless. These ideas only helped me reject the idea of something wrong with me longer, because I didn't look like those people. Most of the time now, I use my aids when I don't need them just because I feel like I have to look "disabled enough" for people. We've built expectations for disabilities, which is funny, cause you couldn't have picked a more unpredictable thing.

I don't expect everyone to be educated, there are so much more pressing things to worry about, but when you have a friend or family member that's disabled, the least you can do is glance at a few resources online or ask them about it. I'm just so sick of family treating this like a big deal, or nurses holding on to me like a toddler still learning to walk when I need to get on a scale, or co-workers treating my cane laying around like a reverent item i will strike them down for disgracing. It's a piece of shitty metal y'all. I don't have a sliver of trust for that thing. Complaining about how cheaply made a lot of aids are to be priced expensive is a whole other post.

I'm just saying, if there was an immediate danger, you won't see me struggling to get away. I'll have already thrown my cane at them and ran. Yes, I have a disability, but I am not weak. You think these beefy arms are for show? You think this hunk of metal I lug around is soft? You think I made it to the end of the day fighting tooth and nail just to sit down and die? I'm fucking feral, fight me.

Conversations with abled people

If you stay with a doctor who doesnt do anything to diagnose you it's your own fault you're not getting help. If you go to different doctors until you find one that takes you seriously you're doctor shopping and any diagnosis you get as a result of this is invalid and fake and you're making everything up and dont deserve treatment. If you cant be bothered to bring up your symptoms anymore with doctors who have routinely dismissed you / told you to just lose weight / exercise and refuse testing you it's your own fault for not putting in more effort. If you go see the doctor(s) constantly until they might finally figure out what's wrong with you you're taking up resources / time of their day you dont deserve and also any diagnosis you get as a result is not valid because if it was real they would've diagnosed it earlier. You cant fucking win

if these damn bastards actually gave a rats ass, maybe i wouldnt have covid right now.

why am i the only goddamn person wearing a fucking mask??? are people just fucking idiots??? willfully delusional ???? (not using that word lightly here)

i feel so fucking small and powerless and im the fucker that gets it! im the one who puts my family at fucking risk! because i need money and i dont many fucking options with my wack ass brain !!

and IM the one who GETS COVID! i hate it here! i hate my fucking nice boss and my fucking nice coworkers and all the rest of the fucking cowards pretending EVERYTHING IS FINE AND NORMAL

COVID KILLS. COVID DISABLES. I HATE EVERYONE.

Extended rant about being poor and disabled under the cut, not really worth reading I just needed to get it out.

Hope everyone’s having a decent day

Listen I’m disabled unemployable massively in debt and have exactly $0 in liquid funds and no sizable assets. Unless you count physical assets. Like I could sell my body I guess. Ugh. Anyway throwback to that one time like an hour ago when I at least had a iPad to use. It was from 2013 so I knew this day would come. Can’t believe it lasted this long. And I know I should be extremely grateful to even have a smartphone, but I cannot use my phone as a computer the way most people do. I cannot hold onto my phone that long. I can’t look at such a tiny screen that long. I can’t crane my neck down for that long. I can hold it up level to my eyes but I can’t hold my arm up that long either. It’s not practical or sustainable. Plus my smart phone won’t last forever. Then what will I do? Without access to the internet? Yeah yeah touch grass nobody had internet for millennia blah blah blah okay but now we do. Now it’s a basic necessity. You need internet to do pretty much anything adults need to do nowadays in order to be an active part of society. I agree it’s fucked up but it’s real. I cannot get to a library. I don’t have friends in walking distance (or any distance for that matter) I have no access to using the internet for more than a couple minutes at a time. Im writing this post in segments over the course of a whole day. I keep coming back to it because I can’t think about anything else. I legitimately don’t know how to remedy this situation.

Not that this is a remedy but I want to inflict suffering onto anyone that’s ever said money only causes problems or doesn’t buy happiness or the best things in life are free or any of that classist bullshit. Two hundred dollars is pocket change to so many people but a little refurbished tablet would change my life right now. I hope every billionaire lives long but suffers endlessly and unfathomably until they die.

Also I hope my dad and his wife are really enjoying their fully refurbished three story three bedroom two bathroom home complete with a sunroom a heated deck/screen porch (yes different from the sunroom) heated floors in every room a garage big enough for their two brand new cars a little Vespa & a whole workshop plus a cute little stone patio with a fucking water feature pond fountain thing that they don’t even see that much what with their practically monthly elaborate getaways and international vacations every year. Fuck I hope they are really fucking enjoying themselves. Meanwhile I have to decide if I want to cut back on food and medicine for a while to save up for a device I can access the internet on.

Anyway. Ignore this I’m just really fucking tired, sooooooo unbelievably fucking tired, of being poor and disabled. Big fucking deal I know I’m so far from the only one. I know I still have so much that some people don’t have. And I’m grateful. But…fucking hell. Poor and healthy would be fine. Poor and disabled but still employable would be fine. Disabled but financially stable would be fine. Disabled with adequate support systems would be fine. My piece of shit grandfather finally fucking off and dying and leaving me something to live on would be cool. I’d kill for any of these. But poor and disabled just feels like someone is beating the fuck out of me and every few minutes they stop for just long enough to help me up and let ms pull myself together and there’s a momentary glimmer of hope until they go right back to beating the fuck out of me. I feel like eventually I won’t be able to get up or pull myself together anymore. I don’t fucking know.

Anyway at least I have a place to stay!! At least I have something to eat!! I can make tea if I want!! My eyesight is going slowly enough that my glasses are still usable!! The fact that I even have glasses in the first place!! The fact that I have any clean water at all, even if it only stays hot for three minutes. I can still take a shower. I have books to read. There a lot of ways in which my body and mind have not yet let me down. Honestly how dare I complain about anything I guess??? I don’t fucking know how I’m supposed to feel