#tw: medical neglect?

[stuffie-medical-vents]

We've had GI problems for months and the doctor just slammed us with meds only and "yeah eat the blandesr food possible from now on" and just ignore any questions we had like. Ma'am. I want ANSWERS, not just what you yourself said is the laziest label

Oh, dear, that absolutely sucks. I had gone on many diets due to my medical issues and how I'm a medical mystery. It helped a little. But it never stuck with me.

I'm sorry that they just slapped you with a diet and left. I hope you get a better doctor or get proper help soon.

[compassionatereminders]

Hey did y'all ever think about that if doctors blame all fat people's medical issues on them being too fat without proper investigation and then feel justified in neglecting their medical concerns, then statistically more fat people WILL develop and potentially die from serious health issues and it might not actually be because of the fat when everything comes down to it

[enoughbykelela]

My other post lost traction, but Brittany Delaney, a young Black single mother from Minnesota, is fighting for her life against cancer and lupus. Her first two rounds of treatment were unsuccessful and she has spent a lot of time in and out of the hospital, all while suffering from medical racism. Her need for support grows more dire with each day that passes. Her c@sh@pp is $survivinglupus30 and v3nm0 is Brittany-Delaney-3. Her gofundme is linked in the article, and you can also find more details about her situation. Please spread. Thank you!

[genderkoolaid]

This happened in 2022, but I didn't hear about it then. A teenage Black trans boy with multiple disabilities was murdered by neglect by his transphobic parents. He was also misgendered by the media when it was first reported, which is unfortunately unsurprising.

[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):

[auschizm]

I have personal trauma with antipsychotics. At a point of slight instability, my psych insisted on doubling my dose of Olanzapine from 15mg to 30mg. The recommended max dose is 15mg. The dose I was on that year is literally called "chemical restraint" because it's mainly used to control extremely violent prisoners. Eventually my friend noticed what happened and got me down to a less debilitating dosage of the med, but I lost a year of my life to this "error." I literally don't remember the entirety of that YEAR. I wasn't there.

[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

[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.

[ineffectualdemon]

Guess who has two thumbs and is getting a hysterectomy!

The guy scare mongered about the surgery for a bit and then tried to tell me my mother, grandmother, and great grandmother needing emergency hysterectomies "didn't indicate anything hereditary"

Me: well they all had PCOS and had their concerns and symptoms ignored until it nearly killed them so you can understand my concerns

Also!

Me: so this injection..all the literature I find doesn't recommend it for longer then 6 months

Him: yeah that's what it's licensed for but it's safe for longer

Me: evidence?

Him: I know so

Me: …DOUBT

[smallishimps]

IMPORTANT ANNOUNCEMENT

TW MEDICAL, UNSAFE HOME LIFE (Possible mentions of abuse and neglect). Read at your own discretion.

The body has been on and off ill for nearly our entire existence. We have been chalking it up to the home environments we keep landing in.

It is actually acute Tonsillitis. We grow heavily ill once or twice, and on occasion three times, a year due to the body's tonsils swelling and abscessing. In our first home we weren't allowed to get them removed die to "cost reasons" and have suffered since.

Tonight we went to the ER and have been told to contact an ENA to discuss having them removed as this is the longest and worst we have ever been ill. Jamie has fled front at the mention of visiting a doctor. We don't know when he'll come back.

Another factor we believe is causing this, is that the household we are in makes it incredibly difficult to eat. There are no foods available on a regular basis that the body is capable of consuming; we have gone an entire two days with nothing but a snack a few times recently as the ones with the money do not listen to our requests for foods we can have.

Please keep us in mind and consider supporting us if you are stable enough to do so (DO NOT FEEL OBLIGATED) On our Ko-Fi. Any money we acquire will go to food and the savings to find a safer home environment. If you are also in a bad position, do not feel afraid to simply spread the word.

Apologies for my rambling and Well wishes to other folks.

-ASMODEUS

[compassionatereminders]

I'm glad we all agree that talking to the police is a no go, but I wish people would quit it with the "but you can and should ALWAYS tell your doctor/psychiatrist/therapist EVERYTHING!" Because bigoted doctors, ignorant doctors, ableism, medical neglect, forced treatment and medical abuse are all very real and widespread problems. And facts are that I barely know of one single disabled person who has never dealt with a shitty "health care professional". So yes, in an ideal world you SHOULD be able to safely tell them everything all the time, but this is unfortunately not an ideal world, and there are plenty of situations where it isn't actually safe or advisable to do that

[nightmarekilljoy]

I get neglected often, medically and otherwise. People don't understand. Certain individuals steal from me, make my life hard, don't let me do what I need to, interpret all my symptoms as some sort of thing I made up in my head because I think so much about it.

It sucks. My body is failing me and everyone ignores that.

So I started to return the favor to these certain individuals. I'm done being the good quiet person they can walk over.

-Amber (she/they/it/star/shine/rot)

[talkethtothehandeth]

I started asking my ex pcp (derogatory) “Are you unable to do [insert testing/referrals that would maybe help get me closer to a stronger treatment/recovery plan], or is it your personal preference to not initiate these options?” And applying it to other doctors/medical workers and

It gets them to shut the fuck up and do their job real quick, because they don’t want the problems of me going to the Daddy Admin, and bitching about their blatant refusal to help me.

Anyway I’m getting more labs to check my levels 😛

[gor3sigil]

23/11 - The black labret and bleeding gums

Yesterday, I took off my labret piercing. I noticed it was doing some pretty bad damage to my gums and teeth, that I’d really like to keep in relatively good health. It made me think about her. It was sad, in a sense, because this piercing made it finally bearable for her to look at her reflection in the mirror. But it was, at the time, the bare minimum she could do to take back control over her body, her face, her life, whilst being actively suicidal. She never cared about teeth. She barely brushed them, in fact.

And now, I have to take that little stone away from the mural of ourselves we built, little by little, brick by brick. I promised her that for this jewel we had to take out, we’ll get pierced twice, on the same lip, vertically, if we can. If we can’t, we’ll do the nostrils. But she’ll get something back, pinky promise. Only now, it’ll be with the intention to be a work of art, complimenting our features, more than just repairing damages. Just like the tattoos over our scars. Just like our flat chest.

I also promised to put her black labret in epoxy, to wear as a necklace. She hasn’t gone anywhere. When I look at my reflection in the mirror, my hair growing out, even after 2 years of HRT, it’s still her that I see, clear as day, with her little mischeavous smile, her contagious laughter, her intense gaze looking at my own soul, our soul, to remind me that she has never died. Sometimes she talks to me still, she lets me know that I may be in control the vessel, but she is still the primary life inside us, the flame that drives us forward, something transitonning, changing our name, cutting through flesh could never erase. And we hug, and we cry from the same eyes, and we scream from the same mouth, and we drink from the same glass.

We’re at the hospital, she’s scared she never got better. She hates the scent of disinfectant and the nurses. I have to calm her down when we’re put on oxygen. Keep a brave face when they cut ourselves open once more. “But we’re so young still !” she yells. I wish I was her age. I wish I didn’t care about bleeding gums. I wish I wasn’t a month wiser.

She looks at our reflection and she says: “Hey, let’s get our lips pierced as a reward for going through surgery !”. One jewel per tonsils removed. I spat out a trail of blood in the sink and brushed my teeth. I wish we never cared for bleeding gums.

I read her back the letter I wrote to our parents, asking her what she thinks, should we send it ? She scoffs and goes back to play. She thinks her pain doesn’t show, even after all these years, even after she almost died from it. She thinks I can’t see it because I’m not her. And yet.

She tears up as I unscrew the black labret from our lip. We never got taught how to brush our teeth. It’s all their fault, she says. It’s all their fault we have to worry about bleeding gums. I hold her hand. She brushed our teeth like she could repair the damage in one flush.

Last night I dreamt I was losing my teeth, but new ones grew, stronger. I wish for it to come true.

[spinzolliii]

I’m curious. For those of you in the whump community

[furiousgoldfish]

I finally caved in and started using pain medicine to deal with the pain. This was a very hard thing for me to do, because for the most of my life, I believed that I both didn't deserve any medicine, and that it was bad for me.

Thinking back, my family used a lot of medicine daily, but when I was sick, I was told to 'work through it' or that my immune system had to be strong enough to take it. I wasn't even taken to the doctor unless there was a culmination of multiple issues at once. Even when taken to the doctor, I've been told over and over what a burden I was, how much of their time I was wasting, and how I got sick on purpose.

I became convinced that if I wanted to be healthy, I would bear any sickness without the help of doctors or medicine. This conviction became so strong that if I was forced to take any medicine, I would have a volatile reaction, start having a complete breakdown or immediately get sicker. I started believing that my body is resistant to medicine and breaks down if any is introduced. It was more likely that I was hanging onto my belief that I had to be 'strong enough to survive anything without medicine' so much, that if this got violated, I would psychologically break down and believe myself weak and broken permanently.

As an adult, I would take medicine only when pain was such high level it was unbearable and pushing me into suicidal thoughts. And lately, I've been having lots of that, pain so severe it would paralyze me completely, I wouldn't be able to speak or think, I would even end up making noises, which, I was trained not to do, even when tortured. There was an instance where I was in so much pain I couldn't control my hands enough to take medicine, and found myself having to ask someone else to give it to me - which was horrifying to me. And I finally realized, I can't wait that long. I have to take the medicine before it gets to such extreme levels.

So, I am slowly letting go of my ideas that medicine will make me weak or mess with my immune system. I'm looking up what medicine does to the body and for the first time, seeing realistically what the risks are, what is happening inside of me if I take any, what are the possible side-effects, what will it truly do to my immune system. The entire process is extremely scary, because I built so much of my identity on that perceived toughness and 'medicine is bad' mindset. Just casually learning that I've been wrong about everything for all of my life is a lot to swallow. But I can't live like this anymore. I can't stand any more of the pain. Even if medicine will give me some mild side effects, or is a bit tough on my stomach, taking it responsibly will not give me any permanent damage. It will keep me alive through the pain and make it survivable. I can't live in an amount of pain that is making me suicidal.