#medical neglect

[justsomerandomgay]

i remember being ten years old and wishing to die rather than experience the pain i was in yet still my parents and my doctors didn’t believe me. sometimes it just hits me. that wasn’t a normal experience for a ten year old, was it?

[talkethtothehandeth]

Before every appointment (minus for my allergy shots) my body gets so stressed and triggered because of medical trauma and my mind becomes more negative and pessimistic. I get so frustrated with everything and I am very short tempered with things that become out of my control— my pain, dropping things, stuff not working correctly, my inability to be calm because my body goes into fight or flight.

I feel scared and I hate admitting that because it feels like a weakness that I cannot overpower, but instead it takes over every part of me, forcing me into the darkest space in my mind because all of the memories I have of being gaslit, called crazy and being dismissed. To me being dismissed triggers my problem with abandonment (due to my bpd) and it makes me angrier that they even think about ignoring me and leaving me to just get worse.

I can’t stand doctors, I can barely handle nurses— like the one who congratulated me for losing so much weight even though I told her I was literally starving. I hate not being in control, as if I have any control over my own body. It’s so unfair, it’s demoralizing and exhausting to live in a body that doctors just think is stressed. Like yeah of course I’m stressed, my body is always going AHHHH and you calling me crazy or dismissing me obviously will make it worse.

[thebibliosphere]

Whenever I talk about the medical neglect and ableism I've encountered as a victim of the healthcare system, there's always some cockwaffle who feels entitled to come into my inbox and make the argument of "not all doctors" while talking about how "people like them" (because it's always someone in a field of medicine who does this) are doing their best and it's really hard because so many people fake being ill to get on welfare (Yikes), but like, yeah, obviously #not all doctors, because if all doctors were negligent, bullying scum bags, I'd be dead.

But here's the thing: while I truly believe that the majority of doctors are doing their best in a system stacked against them and their patients, their presence does not negate the mass harm caused by the bad ones. And there are far more bad ones than you realize.

Fuck, John Oliver literally did a segment on this last week:

Yes, the truly bad, malicious doctors are in the minority. Most are just horrifically burned out and fighting a losing battle against a system, killing both them and their patients through a lack of funding and resources and profound overwork.

But the malicious ones do exist, and they will go out of their way to harm patients who don't kowtow to them.

I almost lost my life because when I was in my early twenties, I told a doctor I didn't think she was listening to me, and I disagreed with her assessment of my mental health (she was not a mental health doctor, and I was there for heart palpitations and chronic pain). She retaliated by putting "non-compliant" in my file.

There was also a fun little "doesn't show respect" note too that lives rent-free in my head because I know I wasn't rude. I was polite. I just didn't agree with her, and my refusal to accept her off-handed comment that "you probably have bipolar or BPD" (again, I was there for heart palpitations and chronic pain) meant I was "refusing care."

I wasn't. I just refused to be slapped with a mood/personality disorder when I was there because I kept fucking fainting when I stood up.

(Spoiler alert: it was dysautonomia)

That "non-compliant" marker followed me around for years. It followed me across an ocean and effectively ensured that any doctor I saw was going to treat me like absolute dogshit because no one wants to help Difficult Patients. It wasn't until I was so undeniably ill, literally on the brink of death, that anyone helped me.

I'm alive because of a good doctor. And all the good ones that came after him because of him.

So, I know they exist. You don't have to tell me that.

But I really fucking need you to acknowledge the bad ones and that you're part of a system with a long, long history of abusing minorities and vulnerable people. I need you to acknowledge that because it's the only way we're going to survive this godforsaken nightmare and make things better.

So yeah, #notalldoctors, but if you feel the need to say that because someone talking about being literally left to die by the medical system hurts your feelings, I'm going to have to ask you to take a step back and ask yourself if you're going into medicine for the right reasons.

Namely: do you want to help people, even the "difficult" ones?

Even the ones who might disagree with you?

Even if they're on welfare?

Even if they'll never get "better" in a way that means "cured"?

Just a thought. But hey, what do I know. I'm just someone who experienced hemolytic anemia because doctors kept telling me I was anxious and needed to exercise more 🤷‍♀️.

[cistematicchaos]

Actually lol I think disabled people who've been abused/neglected by doctors/nurses should be allowed to be as pissed as they want about it and people who berate them for not understanding how hard being a doctor/nurse is or some such should literally shut the hell up. There is nothing immoral about being angry, especially about shit like this and if you think disabled people don't understand how hard capitalist systems can wear you down, well, you're not just mistaken but ignorant as fuck. 

[starrienights-returns]

shout out to disabled people who can't access aids

shout out to disabled people who have to fight to be believed

shout out to disabled people who can't get diagnosed for any reason

shout out to self-diagnosed disabled people

shout out to disabled people who have experienced medical neglect

shout out to disabled people with unsupportive/abusive family

shout out to disabled people who are forced to push themselves beyond their limits

i love you

[incognitopolls]

We ask your questions so you don’t have to! Submit your questions to have them posted anonymously as polls.

[neuroticboyfriend]

honestly you probably shouldn't go into the medical profession if you aren't prepared to treat patients with dignity and respect - even if your job exploits you, even if your bosses suck, even if you're exhausted.

yes, you are allowed to have feelings and be tired. but you have to be willing and able to either admit when you can't do something (and take the consequences), or put how you feel aside and do your job. for the sake of your patient.

you and your job may be harmed by the medical industrial complex's wrongness, but to your patients, you are part of the complex that is also gravely failing them. you have the power to be a force of goodwill and care, or an instrument of oppression.

that is what you're signing up for when you become a medical professional. don't like it? don't become a medical professional.

[phleb0tomist]

did you grow up with chronic pain? did you get called sensitive as a kid/teen with chronic pain? were you bombarded with wisecracks from adults who said you won’t know real pain till you get older? join my initiative to ban this vile practice from planet earth!

i had chronic pain as a kid. (still do now.) my physical ability was best in childhood, like, i could do cartwheels then, meanwhile i can’t walk now. but istg my pain was regularly at this very same level back in childhood. ok i have extra symptoms now which make things harder, but if we’re JUST focusing on the pain part, it’s often the same. this blows my mind. the level of pain that i have now, bedbound and with opioids and a million accommodations, is the same level i had when i was 10 when i was just walkin around all day, asking my teachers nicely if i could sit indoors during playtime. (they said no btw.) back then, every time i tried to tell people how much everything hurt, adults said i was “sensitive”.

was i sensitive? is that what i was?

I think i must have been insanely powerful as a 10 year old to be out and about with a level of pain that makes me nonfunctional as an adult. I wonder how many kids and teens are in that amount of pain right now and are being dismissed because of their age. i think the way adults treat children with long term pain is evil. “you don’t know real pain! it only gets worse as you get older! wait till you grow up!!”

okay i waited.

i’m closer to 30 now than i am to 10, and the more hindsight i gain, the more i realise what a horrific violation it is that my pain was ignored when i was the most vulnerable to the trauma of unmanaged pain and had the least frame of reference for what level of agony is normal to experience while climbing stairs

[myalgicencephalomyelitiscfstom]

[allthecanadianpolitics]

Family and friends of a young shelter worker in Nanaimo are speaking out about her death from an undiagnosed serious infection. They told Global News they believe she could have been saved if she had access to a family doctor. Sophia was only 23 years old when she died on Nov. 27 after repeatedly being misdiagnosed by doctors. “She was full of life, super funny, had a great sense of humour,” Sophia’s mom, Melonie, told Global News.

Continue Reading

Tagging @politicsofcanada

[heyftinally]

"You wouldn't last an hour in the asylum where they raised me."

Somehow I don't think this is where Taylor Swift was raised.

Asylums we centers of horrific abuse, primarily of disabled people.

They were tied or chained up.

They were experimented on.

They were sexually abused and raped.

They were beaten.

They were degraded.

They were neglected.

They were murdered.

Asylums served as a way to hide away people with disabilities from society, pretend they never existed, and leave them to die alone, afraid, and in pain. Many having little to no idea why.

The fact that Taylor Swift, an able bodied, neurotypical billionaire who has never encountered even a fraction of the oppression asylum victims did and disabled people still do, thinks this is an acceptable metaphor is nothing short of selfish, vile, out of touch ableism.

She is profiting off of the abuse and the murder of disabled people. She's making light of their abuse by comparing it to her cushy, well to do childhood.

Let's take a look at Taylor Swift's "asylum":

Huge house. Huge yard. Detached two-car garage. In ground pool.

This is not an asylum. It's a home. She had a home. She had her family around her. That family did what they could to support her and make her successful.

That is not asylum life.

She was not experimented on by doctors who believed she was incapable of thinking or feeling. She was not left for dead because nobody could be bothered to clean and feed her when she was incapable of doing so herself. She was not denied access to society or human connection. She was not murdered for being disabled.

Might she have been abused? Sure. Abuse does not make an asylum.

This lyric is nothing short of ableist, and it demonstrates with incredible clarity that Taylor Swift only supports minorities when it makes her look good and suits her purposes. She doesn't care about actually being informed about oppression or being a good person. She'll use minorities in whatever ways she believe will rake in the most profit. She doesn't care who she hurts, as long as she adds another couple millions to her billions.

It's time to demand some real accountability.

[ink-asunder]

Sometimes being disabled is metaphorical tunnel vision. For every small action, there's pain and fatigue on the other side, so you overthink and procrastinate every move you make. You put on real shoes instead of slippers for the first time in 6 months and wonder if it was always this hard to tie your shoes? You're not sure exactly what's different, but you just remember it being... easier.

At a routine appointment, your doctor lectures you about deconditioning instead of ordering physical therapy or diagnostics for your worsening neck pain. You can try again in 4 months.

You look up deconditioning later, but all you can do is wonder why they haven't come up with a term for a disabled person acclimating to their severe pain and limitations to the degree that they can't even tell exactly in what ways their disability affects them anymore.

[schizopositivity]

Why it's hard for schizophrenic people to get treatment and diagnosis for physical health problems:

• Having "schizophrenic" in our charts makes a lot of medical professionals automatically not believe us. Especially if it is a problem that they can't instantly see themselves. They may think we are either delusional or having some kind of tactile hallucinations. They could see it more as a "psychiatric problem" rather than the physical medical problem that it is.

• If you have flat or blunted affect, they may not believe you, especially if you are describing pain. They have the expectations that you would be screaming, crying, grimacing, etc. When you are straight faced and monotone and say "I am in extreme pain right now" they will likely not believe you. And this paired with medical professionals views of chronic pain just makes them not believe you even more.

• Alexithymia makes describing your symptoms very hard, and even harder to describe how the symptoms affect you. The medical professional goes off of what you tell them, if you are vague or don't have the words, they will not understand you or not believe what you are describing. Either way that will hinder your road to treatment and diagnosis.

• Having memory problems, or trouble keeping track of things can also hinder your care. If you can't remember, or even remember to write down how often a symptom occurs, how long it lasts, how it felt in the moment, and how it impacted your life at the time, they may once again not believe you. Diagnosis often requires some sort of timeline or prevalence of symptoms, and not keeping track of that could keep you from diagnosis.

• They may avoid prescribing pain killers (even if you need it) because the fact that schizophrenic people are more likely to abuse drugs than the general population. And while that fact is true, it doesn't mean that someone in extreme pain does not deserve the right to pain killers just as much as anyone else who needs them.

• Being part of a disenfranchised group while also being schizophrenic can have compounding affects on your physical health treatment. Being low-income, being a person of color, being assigned female at birth, being transgender, being intersex, any other disenfranchised group or any combination of these will impact how you are treated by the healthcare system.

• Fear of medical professionals, or fear of Dr.s offices can impact the quality of your visit. You may feel too frightened to tell them how you really feel, you may just completely avoid going into the building at all. This can happen to anyone but is especially common for schizophrenic people due to our paranoia, inability to advocate for ourselves, lack of self esteem, historical medical abuse or personal experiences with medical abuse. Plus we can have doubts about the quality of our care because of any of the other reasons listed above.

And all this occurs while we as schizophrenic people, are at higher risks of several physical health problems (you can read about it here):

[thebibliosphere]

I think sometimes it's hard to see my progress with my health because it so often feels like I take one step forward and then a hop, skip, and a jump back in some regards.

I'll improve one thing, and something else will pop up like a constant game of whack-a-mole with Symptoms. It's hard not to feel defeated, even though I know logically that progress is progress, but sometimes, progress doesn't feel much like progress and more like dragging yourself around by the scruff of the neck. It's tiring, in a 'slowly eats away at your soul and makes you increasingly mentally unwell' sort of way.

And then I'll see someone like Magic Dentist Man, who I haven't seen for a while, and the clarity of how far I've come hits me like a ton of bricks.

I've been through a lot since he first started treating me. I almost died, for one thing. He was there for the worst of it. Watched me slowly fade away to nothing until it was almost too late. But he hasn't seen much of me during my recovery. His daughter has primarily taken over my care -- the only person, he jokes, who he trusts with my 'complexities.' When he found the infection on the lower right side of my jaw during my checkup last week, however, he declared then and there he'd be the one to treat it.

"You've been hurt too much already, kiddo," was all he said, like if it was up to him, like if I was his kid, he'd beat the shit out of everyone who came before him. Like the fact that I was so badly brutalized by the medical system that I taught myself to breathe through the pain of root canals without anesthesia was a travesty he'll never forgive.

He's like that, Magic Dentist Man. He sees someone in pain and says, "Not today, not at my hands."

If he asked me to help hide a body, I'd ask how far away and how deep he wanted the hole.

Anyway. He's seen me through some of the worst moments of my life, and today, while he was holding the curing wand over my carefully reconstructed teeth, I caught him smiling upside down at me behind his mask.

"What?" I asked, though it came out more like, 'Hwhut?'

"Nothing," he said, still smiling. "I was just thinking you look alive."

And maybe now, a few hours after the painkillers are out of my system, maybe, yeah. Maybe that's hitting a little harder than I expected. Because he knows, y'see? He knows how far I've come. Even if I sometimes forget.

[cistematicchaos]

It always pisses me off when I say my grandma was murdered and the minute people hear it was done by medical professionals, they no longer give a fuck. Not as in they don't care she's dead, but as in they believe it was just an accident, or it was inevitable because she was older, or it was her fault because she was mentally ill. Its as if murder via medical professionals/our healthcare system is invalid, people are just act like she fucking died-as if her life wasn't fucking stolen. Y'all don't know how common this shit is and I've seen it happen numerous times over, as well as seeing numerous attempts and its such a heavy weight to carry.

People act like I'm exaggerating or just shouldn't speak of it, because it reflects badly on our medical system and especially as someone who's mentally ill, someone who's crippled, its terrifying to see how easily it is for medical professionals to murder people like me and for us to just disappear as they go on living their life like nothing happened, watching eugenics play out right in front of you. And how the fuck are you even supposed to grieve when your loved one's death is "invalid" in people's eyes and you're not even supposed to discuss it? its a mess.

[gentlemanbutch]

haaaa just found out that the prick who told me nothing is wrong with me after I sent him my medical history and current long COVID symptoms has a pattern of doing this!

I mean I didn't think this was so controversial but do 👏 not 👏 go 👏 into the 👏 medical 👏 field 👏 if 👏 you're 👏 going 👏 to 👏 dismiss 👏 patients' 👏 pain