#medical mistreatment

[textk4kira]

pcos as an intersex condition

I believe the reason why many people are resistant to the idea of PCOS (polycystic ovarian syndrome) as an intersex condition is because they would have to accept that many people who are AFAB (especially cis women) are in fact, intersex.

I was assigned female at birth and diagnosed with PCOS at the age of 19. It took me some time to come to understand my intersex condition, which includes elevated testosterone levels and irregular periods. I was prescribed birth control to manage my symptoms and received an ultrasound to check for cysts on my ovaries (it was during this ultrasound appointment that I first experienced an instance of medical malpractice.)

I'm also a nonbinary person who struggles with mental health issues.

Overall, I'm proud of being intersex And trans. I stand in solidarity with my trans and intersex friends and family 💗

[wither-is-suffering]

If one more fucking doctor looks at me and says starving is fine because I'm fat I'm going to kill someone

[lifewithchronicpain]

Apparently rest is actively harmful for healing from a concussion. You actually heal better with targeted therapy. But many doctors have not updated the advice they give and continue to just recommend rest.

[phleb0tomist]

yep, i’m still ME-posting!

so another young woman with severe ME is being denied basic sensory accommodations in an NHS hospital. carla’s parents have been advocating tirelessly for her and even taking turns physically shielding her from the unnecessary light that is causing seizures, pain, and loss of consciousness. if carla’s symptoms were unexplained then maybe i would understand why the hospital keeps trying to expose her to lights, but she’s literally diagnosed with very severe ME, where the body cannot adjust to sensory input, so forgive me for finding it evil and pointless to do the thing that makes her illness worse. this is the norm for how hospitals treat people with ME and it’s inescapable if you want to receive any medical care at all like the feeding tube that carla needs

link to article and news video

[wakandama2]

JUST BECAUSE OZEMPIC CAN CAUSE WEIGHT LOSS DOES NOT MEAN IT IS A WEIGHT LOSS MEDICATION. PLS STOP USING IT IF YOU ARE NOT DIAGNOSED TYPE 2 DIABETIC 🗣️🗣️🗣️🗣️

[fauvny]

Shoutout to the chronically ill!

You will find your way. Take the tube of your IVs and use them as a weapon against the very people who hurt you.

I’ve been sick since I was 14-15. Ignored by doctors and ultimately have gone through enough major surgeries, it’s affected my heart. But I keep going. I keep going not because I have to but because I choose to. I push back against the very people who have neglected and cursed me into this life just to show that no matter how much abuse I take from those with licenses to experiment on people, I stand strong. Punctured, stitched, poked, prodded.

[medusa-fem]

Any rad fems have the magick secret for getting doctors to listen to you as a "mentally ill" young female? I have every symptom of a posterior tongue tie, I have chronic neck pain and multiple small lumps in my neck, and extreme constant fatigue. I just feel like this doctors appointment coming up will be like all the others. I feel shoved out the door when I want help. 3 doctors appointments with my old doctor and she wouldn't even do anything but theorize the bumps are a cyst or a muscle knot, and send me physical therapy videos. The tongue tie hasn't even been caught yet despite it potentially being the cause of constant jaw pain and some trouble speaking for long spells.

[tobeabatman]

Fat people, especially us fat women, can’t trust healthcare professionals. They always find a way to relate everything to our weight. So we learn early how to advocate for us in healthcare.

No matter whether it’s a dermatologist, a psychologist, an OB-GYN, a cardiologist: your diagnosis is fat. They won’t believe us on a regular doctor’s visit, nor do they believe us in the ER. I know of too many cases where patients died, not because of their disease, but because healthcare professionals wouldn’t treat their underlying condition before they lost weight.

This is present in shows like My 600-lb Life as well, where many participants die due to them not getting help (for their possible binge-eating disorders, mental health, or any actual medical help besides the promise of a surgery).

If some operating tables, machines, and tools aren’t suitable for very fat people, then that is a problem for the healthcare system to solve!!

There’s so much research on fat people, but none of them actually search for ways to help us: they’re focused on proving their biases true, so that they can possibly deny us healthcare in the future too.

[andiebomb]

Totally different than my regular posts but fuck u

(TW/ suicidal tendencies, chronic illness, vent)

No one understands type1 diabetes unless you actually have it, I was in the hospital (one time of many) for intentionally putting myself into DKA so that I could lose weight and then die (I’d look so hot in my casket) so the hospital called the crisis guy like how they normally would for an attempt,

but because it was a matter of me just giving up on having to CONSTANTLY monitor and be hyper vigilant of my body (WHICH REGULAR PEOPLE DONT HAVE TO DO) they were kinda clueless on how to effectively help me.

Normally when someone “gives up” it’s on their basic needs like eating, self care and shit like that but for me it was just stopping putting needles in myself, doing math to be able to eat and stabbing the tips of my fingers 20 times a day

I was exhausted, my life is basically being a 24 hour nurse for myself.

Plus I’m fat so having diabetes just means everyone blames my illness on myself, which isn’t how type 1 diabetes works! I didn’t do anything, I never drank soda, I rarely ate sugar but that’s how the general public thinks how people get diabetes! When actually my pancreas is just a little BITCH WHO CANT FIGHT BACK AT MY AMMUNE SYSTEM!

This crisis guy came into my hospital room and started giving a lecture on TYPE 2 DIABETES! I AM TYPE 1 THEY ARE VERY DIFFERENT! And even his lecture on type 2 was bullshit!

His man looks me in my eyes and says “if you wanna be happy lose weight by eating healthy and exercising. Your never going to be normal so stop acting like you are.”

…I am also autistic so I’ve struggled with feeling like a foreign creature, unhuman my whole life.

This man just reinforced every. Single. Reason. Why I wanted to kill myself.

And honestly after he said that I started sobbing. He left the room without guilt and said I was free to discharge.

Hearing that I fully started to laugh my ass off at the absurdity of the situation, this man WHOS JOB IS TO STOP ME FROM KILLING MYSELF just signed my death certificate.

I didn’t end up killing myself purely because… FUCK THAT GUY IM GONNA BE FAT AND HATE MYSELF AND BE THE MOST NORMAL PERSON EVER! HE CAN GO EAT A DICK!

Anywayyyyy hideduo is so cute!

[healingjusticedigitalblogem]

Roots of Medical Industrial Complex

The concept of the Medical Industrial Complex (MIC), as discussed in Roots of the Medical Industrial Complex by Cara Page, reflects the interwoven systems of profit, colonization, and control in healthcare. This corporate-driven model places profit over care, perpetuating historical ideologies that dehumanize marginalized communities. As outlined by Patty Berne, the MIC's foundation lies in racist, ableist science, emphasizing control through bodies seen as expendable for the benefit of the wealthy elite.

One disturbing example is Dr. J. Marion Sims, considered the father of modern gynecology, who performed brutal experiments on enslaved Black women without anesthesia, believing they could endure more pain than white women. This horrific mistreatment laid the foundation for gynecology, embedding racial bias into the medical field from its very inception.

What I found particularly interesting was the historical connection between the MIC and population control, a concept that began with Thomas Malthus's theory of overpopulation. Malthus blamed the fertility of Indigenous and women of color for environmental degradation, which led to policies aimed at controlling the birth rates of these communities. The continued intersection of eugenics, as highlighted in the forced sterilization of people deemed "unfit," reflects a disturbing legacy that persists today.

This text reminded me of the ongoing fight for healthcare justice, particularly during the COVID-19 pandemic. It highlighted the disparities in who had access to life-saving care, reinforcing how deeply rooted these systems of control still are.

For further reading on how eugenics shapes modern medicine, you can check out Harriet Washington's Medical Apartheid, a profound book on medical experimentation on Black Americans.

[dream-in-seoul]

Medical rant, sharing because it might help someone feel better, because I know it helps me.

I had an appointment with a new GP yesterday. Amazing nurse, sweetest I have ever met. Same for the technician who took my blood. I was honestly getting excited. It seems great here!

But then I met the doctor. I insisted my mother goes in with me, because I have learnt my lesson about going in alone.

"Teenagers tend to lie when their parents are here" was what she told me. Cool I said, I am 28.

We sit down, she shakes her head. "I assume you are well. You are 28, why are you even here. You cannot have health issues."

We moved on to some paperwork, the routine stuff. She asked why I am there.

"Should I start with my oldest symptoms or newest. What is best for you?"

She gave me a stern look. "You're telling me you have more? Forget it." We did more paperwork, telling her about my family etc.

Eventually I pulled out results of my blood work. Stuff like glucose, minerals, hormones. "What do you expect me to look at here?"

"Am I not suppose to bring result here? "

She called the nurse "it appears this miss brought herself some blood work she didn't tell us about" I could see the nurse wince. I apologised to her that she had to run in to take care of it. (Usually we give results to doctors not nurses where I am from, but I guess this was different)

The nurse told me not to worry about it, that she was just glad not to get scolded.

We moved on. She told me "what do you expect me to do with this? I am not an endocrinologist."

"I know, but I need you to write me a recommendation so I can visit some."

"You don't need it. You just need to lose weight. You clearly do not understand physics-"

I frowned "let me stop you right there. I can assure you I eat well. I get sick all the time and cannot eat junk food even if I wanted. I track my calories. I track what i burn too."

Of course, she didn't believe me. Called me a liar. My mother stood up for me. The doctor moved on.

In case you are wondering, I never mentioned I want to lose weight or that I am unhappy. I want help from an endo because of other health issues that seem to be hormone based.

She pat my stomach and noticed scars on my wrists. "Those are self harm scars?"

"I am sorry, that is none of your business," I said as politely as possible.

She completely flipped. Told me I am rude, unstable. That I treat her horrible and she will not work with me. That I am a liar who keeps things from her. That I clearly don't want to be well so there is no reason to help me.

I calmly got dressed, sat down and look her in the eyes: "But doctor. Why should I trust you when you don't believe a word I said."

She clenched her jaw. "Not sure where you got the impression i don't believe you" she turned back to her computer.

I was so proud of myself for standing up for myself. I told her to order more bloodwork and give me a recommendation for endo and ultrasound. To my surprise she has.

I am not sure I will keep her as my GP, probably not, but I am proud of myself. So proud of myself.

[the-withering-system]

I wish I could talk more about what happened to me in hospital. I wish I could name and blame all the doctors and nurses who purposely hurt me, but I can't. I still need that hospitals help, they've already lied on my chart and discharge papers so I don't even have an accurate paper trail.

The way hospitals treat patients, and in the instances in referring to, paralyzed patients is disgusting. A patient being unable to move doesn't make us sub human, we're fucking people.

[aibidil]

I met a new doctor the other day and he asked me if I'd ever been active on patient support groups. I was like, "Actually, no. I have for other conditions, but not for this, because I never felt I needed support."

For my pituitary issue,

there are objective metrics for diagnosis and management

no doctor has ever dismissed or downplayed a concern I've raised

doctors have almost always given good advice

the one time I had a bad doctor, I was able to navigate the situation easily with basic medical research ("From what I've found, the best practice is...")

No one (myself, doctors, family members) has ever second-guessed my diagnosis

Why would I need a online support group?

Contrast that with ADHD, POTS, hEDS, low ferritin, dyslexia (slightly different bc it's educators not doctors, but same thing otherwise), and encopresis (all of which I've figured out largely through internet support groups as patient or parent-of-patient):

doctors know very little, were taught incorrect information in medical school, or are bizarrely resistant to certain treatments (eg enemas: I have a lot of thoughts on the homophobia of that one, but that's another post)

my concerns are routinely dismissed

my concerns are brushed off as being caused by something else (anxiety, overweight, etc)

I'm told symptoms will resolve on their own if I'm patient

doctors' advice is either unhelpful or harmful, so I have to turn to peer advice that is helpful and, to protect their egos, lie to my doctors about what action I'm taking

doctors either push pharmaceutical solutions when they're not yet indicated (ie prescribing PPIs before trying nutrition changes to manage pediatric reflux) or resist pharmaceutical solutions when they are indicated (ADHD meds are some of the most researched and evidence-supported prescription drugs)

doctors misinterpret the significance of "normal" ranges of bloodwork results where normal is population average not a range to indicate health (this is common with ferritin, thyroid)

So yeah, it was nice to remember that I truly don't turn to online peer medical support if I don't have to. If I have a medical condition that they actually take seriously and manage well, I am more than happy to hand over the reins, trust what they say, and literally never think about it at all.

I have NO desire to make medical conditions part of my life's work and identity. This only ends up happening because doing the deep dive and figuring it all out myself is often the only way any solutions are found. So when doctors get pissy because patients are learning about things on tiktok or on Facebook support groups, what they should really be doing is asking why on earth people would need to resort to getting their medical information through these channels instead of by asking their doctors.

[pale-plant-bones]

Vent. TW: medical trauma, negligence, mistreatment

With undiagnosed POTS you’re constantly told “You’re just dehydrated” by medical professionals.

I’ve had symptoms for over a decade and still yet a few weeks ago a cardiologist told me it’s just dehydration, both before and after doing a poor man’s tilt table test (at my request) and telling me I met the criteria for POTS. Of course, he refused to do anything with that.

A few days ago I went through the results of some lab tests I had done with my new primary care doctor. One of the results showed I have higher than normal fluid level. I am the opposite of dehydrated. And I probably have been for years, because I have been loading up on salt and water for around the last 6 years at least.

So to every nurse and doctor who minimized my experiences, blamed me for my symptoms, threw on the ‘dehydration’ diagnosis with no effort, and used ‘dehydration’ as an excuse to medically neglect me, fuck. you. Especially to those who forced an IV on me even while I was screaming and begging not again. I hope you all lose your medical licenses.

[phleb0tomist]

What does one genuinely do if they have both fibromyalgia and me/cfs. its an actual comorbidity that exists, and Im curious whether one is supposed to undergo graded exercise therapy or do pacing if thats the case, wouldn't either just worsen one of the conditions?

hello! good question. it’s a sticky situation for sure. i may go on an extended ramble now.

i’m not a professional but from what i’ve seen, the way overexertion impacts ME seems to be riskier than the way inactivity impacts fibro. yes, inactivity may make fibro worse, but the effects are usually proportionate and logical (and often reversible), meanwhile a few days of overexertion beyond a person with ME’s limits can sometimes cause an astronomical worsening for years afterward, which sounds nuts, but is a legit risk. there are reports of people with ME walking into exercise programs and leaving in a wheelchair and never recovering. personally i went from mild to severe after a school trip that involved a lot of walking. before the trip i was technically able bodied and after the trip I was bedbound. I have both fibro & ME and atp my docs say the risk of pushing is not worth it lol. public health guidelines are gradually changing to reflect the reality that it’s not safe for people with ME to increase activity beyond their individual limits, regardless of any comorbid diagnoses they might have.

luckily, pacing isn’t necessarily total rest—it’s doing the maximum activity possible without triggering post-exertional malaise, aka staying within your ‘energy envelope’. you can still preserve muscle while staying in your limits :) people with mild ME may even be able to exercise, especially stuff like very gentle swimming and yoga, as long as it doesn’t trigger PEM.

in my personal experience, when i do pacing, the resting seems to allow some degree of repair and i actually end up with slightly more ability/mobility. long term, i lose function when i push myself (even if i only push gradually in tiny increments) and i gain function when i rest. it’s almost paradoxical. the less i do, the more i become able to do. obvi I’m not recovered but pacing is the only approach that stopped me deteriorating and gave some improvement, which lets me be more active without breaching my limits, which is good for my fibro! yayyy

footnote 1: in case it wasn’t clear, graded exercise usually DOES help people whose sole diagnosis is fibromyalgia. it only seems to be risky if you also have ME. i know people with fibro or POTS/EDS who found improvement from graded exercise :)

footnote 2: almost every doctor i’ve met has a different opinion on how to treat ME & fibro. medical professionals are individuals with varying views depending on where and how long ago they were educated, their personal biases, how up to date on research they are, etc, and your doctor may not agree with my doctors!

[naidje]

Partner just got absolutely steamrolled by our new psychopath of a doctor. We barely managed to get a word in and he'd basically already decided she wasn't worth his time before we even walked in.

"Ah well, half the country has had covid, and none of them have muscle weakness." "We all get a little tired sometimes." "You know chronic illness means you have long-term persistent issues right?"

My dude, she's 90% bedridden. Just getting to this appointment is going to knock her out for the next two weeks. What is wrong with you?

At least Amy somehow managed to manipulate him into ordering the tests she wanted and getting a PT referral. And now we know what to expect from him, which is fuck all.

Ah, the joys of trying to get healthcare as a chronically ill queer person...