#disabled vent

[fallenstarcat]

for disabled people, doctors don’t care about us, our happiness, or even our health. they care about making us look and seem “normal” to them. they care about eradicating our existence, not making our existence easier for us.

it may sound dramatic. but once you’ve bounced from doctor to doctor with no answers or help, them downplaying or even out right denying your symptoms, never being listened to, this really starts to show.

[chuchu-sammika]

Y’know at this point I kinda don’t care if I drive people away with this.

I have a right to talk about my disability, and how much I hate it.

I’m tired of dealing with it. And I’m constantly uncomfortable with it.

It’s hard to live a fully happy life if your physically in discomfort almost all the time. It’s hard to be happy when you can’t do almost anything.

It hurts. It’s tiring.

[satansfavoritedyke]

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.

[anoystercracker]

I feel like able-bodied people are surprised when my disability actually disables me.

So I recently became physically disabled. In the period of a few months I lost my mobility and developed/discovered a few episodic conditions. It's been a huge adjustment for me, but I'm coping pretty well all things considered. The people who aren't adjusting are my friends.

They know I'm disabled (I use a wheelchair so it's not exactly invisible), but they always seem so shocked when my disability actually affects what we're doing. When I'm too fatigued to keep up plans, when my legs are bad and I'm not ambulatory for a day, when I have a seizure or tachycardic or presyncope episode and I need to make sure I'm safe. It's like they expect my disability to be summed up entirely to me being in a wheelchair.

A couple of them have been downright ableist to me, and I have dropped those friends. It hurts, knowing that they completely changed how they saw me just because my ability status changed. The ones who have been doing their best are wonderful, but they are still a little shocked when my disability actually, you know, disables me.

It's hard enough to deal with my ever-regressing health, and I just don't have the energy to also make sure all of my friends are educated. I just need them to understand and stick by me when I take care of myself

[meowtismz]

So, tuesday thoughts... I don't actually fully understand why people want me to hate my disabled body AND being disabled as a whole concept! I have lived like this my entire life, I have dealt with this pain through my whole living journey so should i really hate something that i have learned to accept and live with?

I don't mean to romanticize my illness, my disabilities, my pain even, I just mean to say that like,, maybe, just maybe, I don't have to hate my own literal body that i have fought SO hard to love.

Us disabled people, just like any other bullied minority group, go through SOOO much JUST to feel accepted by ourselves and just to accept the fact we are disabled. And yeah, I hate my illness sometimes, but i love that I am able to accept it and fight to accommodate my own self in this world that wasn't built for me.

But I understand, i get it, I know that able bodied and neurotypical people just don't want us to "give up", they want us to keep trying to be "normal society members" and most of them just want us to keep trying so we don't have to resort to "accessibility". But is it really fair? To try and change the unchangeable just to fit in?

Anyways, I was just leaving some thoughts out there, I kinda wanted to know what tumblr thought about this if anyone actually reads this hahah thanks for coming to my ted talk,

with luv, one of your local neurodivergent cripples

[cpunkwitch]

it would be nice if i didnt live in a world that actively wanted me dead/to kill myself, used me as inspiration porn, discarded me like a broken toy, treated me, my conditions and my experience like an aesthetic or some fictional sob story for attention and praise.

it would be nice if i lived in a world that did more than just briefly acknowledge my existence only to put blame on me for things i cant change, choose or control.

[yikes-ajax]

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.

[spoooky-dog]

I've been immunocompromised my whole life but it was only recently (like in the last 5 years or so) that I've been diagnosed with and given the tools to deal with my disabilities.

My whole life I've been so focused on trying to not appear "weak" or like I'm "exaggerating" things that I never really looked at how things were affecting my body personally.

Recently though, my roommate got sick and brought home some virus that, for her, manifested as a run of the mill cold and mild cough. Of course since we share a household, I got it too and boy oh boy was I not prepared...

I've been bed ridden for now two weeks and unable to keep almost any food down. I've had two ER trips since this all started and am routinely passing out at even the slightest temperature change... all because of a cold..

This whole experience has just made me more aware of how little understanding and caution is afforded to immunocompromised people. Even during all of this I'm getting the "It's just a cold" and "you're exaggerating" despite having feinting and dizzy spells and not seeing any improvement over two weeks and many, many prescription steroids and antibiotics.

It's hard to understand how able bodied people can be willing to risk the lives of disabled and immunocompromised folks over something as trivial as wearing a mask at the grocery store.

No, covid is not "over" and I can only consider myself "lucky" that my roommate didn't bring home covid instead of this damn cold because with how poor my health has gotten, I might genuinely be in a hospital and hooked up to a respirator, talking to my girlfriend about my end of life care if I had gotten covid instead.

I'm pissed off and tired and I haven't slept more than an hour at a time in days.

[chronic--experiences]

Y’all I don’t know how much longer I can do this

I have had MANY people tell me that I’m in excruciating pain because it’s ‘winter.’ While cold weather may flare up symptoms for some people, my family knows that I see very little correlation between cold weather and my pain.

In fact, hot weather tends to be worse for me. My pain doesn’t ‘ease up’ in the warmer months, my muscles ache and I feel drained. On top of that there’s the emotional aspect of feeling isolated because I’m in too much pain to enjoy the BBQs or large family gatherings that others participate in.

I know some people won’t see this text as that big of a deal, but for some reason I have been dismissed so much this week by different people (including having a professor tell me that I just need to get a different doctor if my current one can’t cure me. I wish it were that simple.)

I’m sure a part of these responses come from how we interact with people with acute illnesses. If someone has a cold you say “I hope you feel better soon.” That doesn’t translate well for people with chronic illnesses though. Maybe my flare up will end soon, but another one is right around the corner. It honestly feels so dismissive, even if it’s well intended.

[rambrosius]

One of the things I loathe about the way that I am (that I can do little to do to change) is how all of my problems are chronic. There is no "getting better." Just "getting less bad... for a little bit." It makes it so hard to enjoy the "less bad" moments because I'm bracing myself for the next wave of bad. It's exhausting, and it's so hard to explain to the people around me. I should be used to it, I should know how to cope by now, but I don't. The days just keep getting harder and my mind keeps getting foggier.

It's like trying to build a sand castle, and only having tweezers to do it with. Meanwhile, the people around me are playing in the same ocean that laps away at my progress. But I'm on the beach right? So it must be good? (No.)

[four-armed-angel]

Thinking about how our mom insisted that our disability (asthma) "went away" and didn't believe us when we said that we were still struggling at times.

She's a nurse and we were born with severe lung problems and struggled with asthma and illness our entire life. :/

[chuchu-sammika]

I am one lucky prick. But at what what cost?

When I turned 13, all that happened was that I lost more mobility.

Merosin Muscular Dystrophy is the type of muscular dystrophy that I have. It is an autosomal recessive form of muscular dystrophy characterized by muscle weakness apparent at birth or in the first 6 months of life. Patients show hypotonia, poor suck and cry, and delayed motor development; most never achieve independent ambulation.

[sage-the-goblin]

It's difficult not to freak out when you notice something wrong before your doctor even looks at your results

Tw: medical stuff (vent post)

I've had rib pain and swelling for 4 years now. I told my old doctor about it but we chose to prioritize figuring out my ankle problems so I could walk normally again. (Turns out I had an underdeveloped ligament that snapped) I got my ankles reconstructed and took a year to heal. By the time that was over my original doctor left for a different center and I had to switch to a new provider.

This girl doesn't want to believe anything I say. The only reason I was able to get care is because I demanded it. First I asked for an X-ray of my ribs. She ordered a chest X-ray. I had to call and get her to send over the correct x-ray order, she did send it eventually. I went back and got x-rayed again, the results came back normal. I waited almost 2 months to hear back from my doctor but never did, so I scheduled an appointment again to talk to her.

I found out that they just completely lost my results so she had to go search for them. As I said, the results were normal so this time I asked for an MRI. Instead she ordered a CT scan for me...

I went in yesterday to do the CT scan hoping it would show something. I got my results back 10 minutes after leaving the facility. According to it my organs are functioning normally (which I already knew) so I had to call my doctor again and insist I get an actual MRI this time to see my ribs. She has 3 business days to respond but hopefully she'll actually order it this time.

.

.

.

Because I was curious I looked at the images from my CT scan, specifically the ones showing my ribs... There's a massive lump on top of my ribs right in the spot I've been saying hurts for 4 years now. I'm trying to keep it together until my doctor looks at my images, but my mind is racing trying to figure out what the fuck is on my ribs.

I'm scared. I'm scared that I was right and was ignored. I'm scared that this could affect me getting top surgery. I'm scared that it could be more harmful to my health than I thought....

[femboy-catgirl]

I'm legally considered severely disabled, I call myself medium support needs. I need someone to take care of me half of the time, because I can be independent (like 30% of the time if I'm lucky) until I can't and I need someone else to take care of me or I'll literally die.

I'm 20% of the time bedridden because of pain and fatigue and 35% just unable to leave the house because otherwise I will fall on the street or cry in the middle of nowhere.

the other 15% is being able to go outside but with someone making sure I'm ok.

it's a mix of autism (or what I call severe aspergers since that was my first diagnosis and it's more specific) and fibromyalgia + bad joints disorders.

I just wanted to talk about it because people don't tend to take me seriously.

Like, sometimes I'm just mentally too weak to go outside because of paranoia (comorbid psychosis + PTSD) or because I'm hit with an intense sadness and fear and I just can't. and sometimes I need people to talk for me because I'm unable to have social interaction properly. and I need people to make sure I ate and shit because I'll either forget or not be able to leave the bed to get a snack or all the food in the fridge is something I cannot eat.

I cannot socialize properly, I don't understand social cues or sarcasm, I shower once a week, I haven't brushed my teeth in months, I'm extremely naive no matter how hard I try, I'm very easy to take advantage of, sometimes I cannot speak or speak in a way that makes sense, I get overwhelmed too easily and I either panic or have bad meltdowns. I can barely go to school and I probably won't be able to hold a normal job.

It's frustrating when people say it's not that bad.

[meowtismz]

HATE GUARDIANS HATR HATE HATE "just speak" going start ignoring them now on when say that!!!!! "Oh but we have feels too" GO F YOUSELF!!!! Yeah get angry.... NOT EXCUSE ABUSR AUTISTIC CHILD YELL THEM EVERY GODDAMN NIGHT

[cpunkwitch]

I got like an hour of rest

There's a really bad snowstorm rn

If work isn't cancelled I'm gonna have to call in because I have no ride and can't walk in this weather let alone with how bad a shape I'm in rn

Plus wind, especially loud windstorms like this, are a bad trigger of hours so I'm trying hard to keep us relax and avoid a panic attack

One thing I like doing a lot is making lists, to quote another of my sources "data collection calms me down"

So I think I'm gonna make an entire list of different mobility aids in alphabetical order and sectioned by type.

Idk if it's useful for anyone but I'm doing it anyway

Feel free to comment any mobility aids that come to mind to add to the list! Be as specific as you can!