1y ago

Woman accused of faking symptoms of debilitating illness dies aged 33

www.independent.co.uk A woman who was accused of faking her debilitating illness has died at 33

Her condition, caused by gene mutations, was blamed baselessly on psychiatric issues

Aston sought medical help after her symptoms—which included severe migraines, abdominal pain, joint dislocations, easy bruising, iron deficiency, fainting, tachycardia, and multiple injuries—began in 2015, per the New Zealand Herald. She was referred to Auckland Hospital, where a doctor accused her of causing her own illness. Because of his accusations, Aston was placed on psychiatric watch. 

Research suggests women are often much more likely to be misdiagnosed than men. A 2009 study of patients with heart disease symptoms found 31.3 per cent of middle-aged women “received a mental health condition as the most certain diagnosis”, compared to just 15.6 per cent of their male counterparts. Additionally, a 2020 study found that as many as 75.2 per cent of patients with endometriosis—a painful disorder that affects the tissue of the uterus—had been misdiagnosed after they started experiencing endometriosis symptoms. Among those women, nearly 50 per cent were told they had a “mental health problem”.

81 comments

My best friend might be dying because she’s a fat woman. For over 15 years I’ve watched doctors tell her that her problem is that she needs to lose weight, prescribe weight loss plans, send her to eating clinics, suggest surgery as a solution to her horrific periods that last for months, massive fibroids (I’m talking 12 x 6 inch clots here ladies), fainting, breathing trouble and chest pains, constant body and joint pain, anemia. The last five years she’s barely even been able to leave the house and blacks out walking to the bathroom and it still wasn’t an issue, and all her fault for being fat.
Turns out that iron deficiency was damaging her heart. Those clots were a symptom of another problem. The pain, the breathing issues, all of it would have existed whether she was fat or thin because she has fucking cancer that has likely metastasized to her lungs. No one checked, no one considered any other options until one er doctor was horrified to see her history of iron transfusions and hadn’t checked her heart health , which led to further testing of the non-fat-lady variety.
It’s bad guys. It’s a bad cancer, rare, and has had decades to grow, because she’s a dramatic, emotional, paranoid female who’s fat.
I guarantee any fat man in the world can walk into an ER with chest pains, and they’d check his heart, not put him on a diet.
- I’m so sorry to hear this. It’s sickening.
- I have a friend who was experiencing pain in her abdomen for weeks. 3 doctors in a row just told her she was fat and sent her home. When she finally got a doctor who was willing to practice medicine, it turned out she had an active infection on the verge of sepsis and undiagnosed PCOS that had developed into tumors on her ovaries. Had she not sought a fourth opinion, she would be dead and the doctors that bullied her out of their offices to make room for patients with "real problems" would face no sanction at all.
- I guarantee any fat man in the world can walk into an ER with chest pains, and they’d check his heart, not put him on a diet.
  This is anecdotal, but my dad who is a very fat person (180 kg) has been told by a variety of doctors that his chest pains are because he is fat. He should lose the fat and the pain would disappear. No screenings done, for years. They usually just gave him some generic painkillers and told him to lose weight and sent him home.
  At some point the pain intensifies heavily and he had an heart attack. In the ER they stabilized him, blamed it on him being fat again and let him go again.
  My dad decided enough was enough, and sought out private clinics. It turns out he had a rip somewhere in his chest that created cysts - or something - I was 6 years old at the time and never really understood what it actually was - which had nothing to do with him being fat. They put him in a surgery, fixed that and he was good as new. Still fat to this day, but has pains mostly from being old.
  I think the bias against fat people is cross gender, unfortunately.
  EDIT: spelling.
  
  Bias against fat people certainly crosses genders. But we also get to be women which has a completely separate and even worse bias. We are, no matter if we are far or thin, told we are imagining health issues and being dramatic. Gender specific care receives little to no funding, research or even interest. Even the majority of the drugs we take are not actually tested in women at all. We routinely get denied pain medication even for medical procedures like iud insertion. And if you’re a black woman? Forget about it. There are literally doctors who still believe that black women don’t feel pain like other people do and therefor don’t need medication. This isn’t even a joke.
  article from 2022
- Please don’t put this on the er, as you pointed out she made it for years with these symptoms. The sad truth is that unless it’s causing a true emergency cancer is a slow killer that a primary care doctor should find and manage. If an obese woman over 30 is checking into the ER she is absolutely getting her heart checked for emergencies - eg heart attack. Unless it’s causing hypoxia, fluid overload heart failure is managed out patient.
  
  Oh I’m not putting this on the ER. he’s the only one that took her seriously when she showed up there and saw her iron levels and history and freaked out. If she hadn’t gone there (because she blacked out and crashed her car at a gas station) she would still be getting diet plans.
  They checked her heart at that time.
  But PS, she’d been at the ER getting iron transfusions before this and they never checked her heart.
- Iron deficiency isn't the only thing damaging her heart. Being fat isn't helping.
  
  Thank you for your astute medical observation. Its actually quite relevant that you ignored the context and the point of that comment to say, out loud, "well actually being fat is bad". bravo.
  
  So you are saying they should have checked her heart earlier?
  
  Okay, but what is she supposed to do about that if the iron deficiency is preventing her from being active regardless? If she's not even able to be sufficiently mobile because of her health problems, then if she wants to lose weight she has to deal with the health problems first. The refusal to even check anything to rule out other possible causes aside from weight is a major issue in how doctors treat fat people. Sure, there are some things that are more difficult to detect in fat people and so losing weight may help in further diagnosis in some cases, but there are plenty of things that can be detected regardless whether the person is fat or not, and yet doctors very often refuse to do any tests and simply recommend weight loss as a blanket solution. Weight loss is not an easy process, especially for someone with health issues that impact their mobility, and it isn't a quick process either. Any issues that may have otherwise been caught early can become much bigger problems over time even if the patient manages to lose weight, and if they happen to struggle to lose that weight, for whatever reason, then that just delays discovery even more. It should be standard procedure to rule out anything else that might be causing the issue first before resorting to weight loss, and there's no real reason not to aside from prejudice (and cost in some countries but that's a different can of worms, and it's not like it's cheap to die slowly either). I'm sure that in most cases weight loss really is the solution, but it's much faster and more efficient to rule out other stuff first than it is to rule out their weight first. It takes way less time and way less effort to screen someone for cancer than it does to lose 5 pounds, let alone 50 or 100 pounds. And if the person is for whatever reason incapable of losing weight, like if they can't even get out of their house because of their health issues, then telling them they need to lose weight first before you'll look into other possibilities is essentially a refusal to treat them at all.
  
  This this glib comment proves exactly why no one ever gave a shit about anything except that she was fat.
  No one is saying that being fat doesn’t hurt your health. Of course it does. But it’s not the ONLY thing that can be wrong.
  Prick
  
  being fat for decades is a significant risk factor for cancer too

I'm gonna cherish the day when all these doctors that suck at diagnosing are replaced with AI. It's so stupid that you have to go to 100 doctors to find one that takes you seriously and actually gives you the right diagnosis.
- Unfortunately, AI is only as good as it's training data. If there are biases in the training data, those biases shine through later.
  AI is interesting but not a silver bullet.
  
  Hit the nail on the head. There's a really good book 'Weapons of Math Destruction' that goes into it.
  
  Also most AI systems are not only susceptible to existing biases, but they have a nasty habit of coming up with wild new, and often very creative, biases of their own due to their reliance on random sampling and statistical modeling.
- Supermarket AI meal planner app suggests recipe that would create chlorine gas
- It's so stupid that you have to go to 100 doctors to find one that takes you seriously
  YES!!! Especially those ones where if you want your tubes tied or balls clipped....fuck sake doc, if you won't lop my cords, I will. With rusty garden shears and a whole lot of vicodin!
  
  Oh she begged for them to tie her tubes after her one and only massively traumatic birth experience that ended in a c-section. Her uterine issues have been hell, and they repeatedly refused to even discuss a hysterectomy because “she might change her mind”. Fuck that, she has ptsd from that birth and he’s 19 damned years old now. She’s not having more kids.
  I guess it’s better to have four month long periods and clots the size of your foot.
  Totally normal.
- The problem is that they're all trained with previous human diagnoses and then doctors will have the excuse of "Well the AI says you're a hysterical attention seeking female..."
- We'll need to ensure that this bias against female (and also male) patients isn't adopted by the AI. We're already not properly testing medicine on both sexes. Medical textbooks often list stuff as more or less common in one sexe. This is entirely possible but if the data isn't properly screened we're just moving the problem. Data can exist and be wrong for many reasons. We should address that urgently. It is bad for everyone. I think it is plausible an AI could have reached the same conclusion here because of all the mental health problems considered far more common in women. Did anyone ever even check where the source of that data is? Because some stuff really hasn't been rechecked in the last 50 years I'm sure.
- it's also so stupid that AI constantly chides you for asking it medical advice. yeah god forbid i want to use the free, ostensibly super intelligent tool instead of making an appointment, going there, talking to the guy who may also be wrong anyway, and paying hundreds
  
  If you are talking about ChatGPT: please do not do this.
  ChatGPT guesses which words should come next in a sequence, based on its training data and your prompt. It is not intelligent, and it has no concept of what is real and what is not. It will cheerfully make things up.
  I sympathise with your frustration at having to pay money to see a doctor. I can't imagine how stressful life would be without the NHS.
  
  No current AI is super intelligent. As a software developer who has been keeping up to date with AI progress, I can say with some certainty that AI is far more biased in its diagnoses than human doctors and will often be misled by subtle changes in wording. I strongly urge you to not rely on medical advice from any current AI.
  
  It will not be free, and it will misdiagnose exactly the same way as a human doctor would.
  I'd argue that what Saraphim described, -their friend dying from being constantly misdiagnosed due to weight- is the perfect example of what we will be able expect from an AI doctor. These machine learning algorithms lack fidelity, which is most needed to understand a complex problem.
  Furthermore they have no concept of ethics or morals, and the data they train on reflects the imperfections of our society.
  So for example if all the doctors are biased towards overweight women, the AI trained on their diagnostic data will be too.
  AI doesnt exist but will ruin everything anyways
  One day AI will be a useful tool but to get there, one of the things we must do is be very critical of it.
  
  There isn't a publicly available ai for medical issues (and even assuming there ever will be, it won't be for a long long time) so if you're asking any of the publicly accessible ai for medical advice then I'm sorry but that is clinically stupid. And any medical based ai that currently exists is going to be very flawed in various ways, and no better than a human, probably worse in a lot of ways, hence why we don't use them on a widespread basis.
  Also current "ai" isn't super intelligent by any metric, they're just specialized algorithms. We don't have the kind of sci fi AI you see in movies yet, we only have narrow AI atm, which are just pattern recognition learning algorithms, they don't mimic a human thought process.

When my mother was getting chemo, she was going to miss an appointment so the nurse in charge decided to give her a double dose to make up for it.
The radiation burns my mother received were described as '4th degree burns' they were so bad.
You simply cannot blindly trust medical professionals. They are just as stupid as the general public, just as ignorant, and desensitized to other people's pain. You have to fight for yourself in their arena because they aren't going to.
- What the fuck. What happened? Did she make a recovery? Was there any compensation or consequences?
  
  No consequences that I know of, but I was only 13 so maybe I just wasn't told. The burns healed but the cancer got her the next year.

I had a very misogynistic allergist try to tell me my reaction to a skin prick test was all in my head. He berated me during a tolerance test telling me I was making it all up even though my back was one big welt and I was getting dizzy/confused. I had a previously documented anaphylaxis reaction of severe hypotension that almost killed me prior to seeing this asshole. If I had been in my right mind at the time I would have punched him in his smug face.

My wife has EDS inherited from her mother. Doctors recognized it in both of them, but only her mother is eligible for financial support. While my wife doesn't even get a handicap parking card. Government doctors refuse to recognize it in her.
EDS is very misunderstood because they have good and bad days, and it doesn't show externally. So when she has a good day and can walk, she goes outside. Only to be accused of faking it the next day when she can't get up because they saw her walking.
If I wasn't there for her, she'd be on the streets. Yes, this also happens in countries where health care is almost free... but not for her, she is completely abandoned by government docters while she has all the necessary reports from the hospital doctors.

When I was an EMT working on the ambulance one of my paramedic partners was this absolute sweetheart of a man. Military vet, looked like a good ole American boy, but actually read studies about how women and minorities are treated differently in healthcare and genuinely recognized and cared that it was a problem and strived to do better. One day we were working and had a paramedic student who was a young guy full of energy and confidence.
We got called out for a woman in her 20s with a cardiac issue. I don't remember if she felt like she had an irregular heart rate or if she felt like her heart was racing, but either way, by the time we arrived on scene everything was back to normal. She reported that she'd been having this problem for a few months, had seen cardiologists and the cardiologists told her something was wrong, it was not anxiety, it was cardiac related, but they couldn't catch it happening so they couldn't diagnose yet but were still in the process of trying. She had even worn a portable heart monitor and had no episodes. She was frustrated that she just couldn't catch it in the act because she just wanted to know what was going on, but she had been told if it happened again to go to the hospital for monitoring.
Our paramedic student sat down with her and began asking her all sweetly oh honey, are you sure you aren't anxious, you sure you're not stressed, how is your mental health? You know anxiety can be weird. As I was about to lose my mind my partner stepped in and took control of the call away from the student and reminded him that an actual cardiologist had already diagnosed her with not anxiety so maybe stop being an asshole.
The most satisfying part was after the call was over. My partner pulled the student aside to give him feedback on how his interaction had been less than cool. As the EMT (Aka low man on the totem) it was most definitely not my place to step in, but as a woman I couldn't help myself. I cut my partner off and launched into an absolute tirade about how hard it is to be taken seriously by medical professionals as a woman and how I personally have experienced it and how bullshit it was for him to talk down to her in any situation let alone when she'd already said a doctor told her it wasn't anxiety. I ranted him into the ground and my angel of a paramedic just sat there quietly with a smile on his face and let me go off on him.
- I enjoyed this comment until the last part.
  Nothing against you personally but I think that when you make it into a rant, it begins to fall on deaf ears. Instead of actually listening and thinking, the other party becomes defensive and focuses on kind of ignoring you, waiting for you to finish your tantrum. I think it was better if you had let your partner handle it, because he said it calmly: "it is not your fault, the source is much bigger, but we'd like you to be more aware of it and assess how you can do it better".
  I understand that it's a sensitive subject and I don't blame you for ranting. But if you want the other side to actually change for the better (because he can), you should think how you persuade him to do so.
  
  You sound like what I imagine the junior paramedic would of said after the interaction, "women and their big feelings, leave it to the men to calmly explain"
  Sometimes you just gotta let people have a rant!

I've been on that journey myself being a chronically ill (from a young age which doesn't help with the patronising and assumptions made, and apparently autistic, which I only found out as an adult because "autism is a boy's condition") woman.
I still, decades in, get the doubt and the "it's all in your head" and the "just emotional" and all that nonsense. I've stopped going to the doctor because it's just too distressing to try and break through that judgment and get any actual care. I won't even call an ambulance at this point (in the UK, so not to do with cost) because I've been treated so poorly on several past occasions I've had to.
And yet I'm one of the lucky ones because eventually after years of fighting I was diagnosed with the illness I have and I've not been locked up on a psych ward for it (yet, though of course I was prescribed psych meds as first second and third resort to my pain complaint).
This is one in so so many ways that the patriarchy quietly keeps us down, and it's so fucked up that when you try telling those who aren't impacted by it about it, even if they don't mean to, the easiest thing for them is to gaslight you because they've never experienced or witnessed this kind of treatment, and doctors are seen as infallible, so you must be imagining it, making it up, exaggerating - that's all easier than accepting the reality of just how fucked up and oppressive such deeply respected institutions like that of medicine actually are (not just misogyny of course, but ableism, racism, queerphobias and so on). The people in these jobs are still just people, they are socialised in the same oppressive world the rest of us are, and carry the same biases as the rest of the population (if not often worse due to disproportionate privilege in the field).
I hate that this is just going to keep happening, and in many places get worse.

One in 5,000 sounds like a hell lot more frequent than rare!
- In medicine, "rare" is usually defined as affecting fewer than 1 in 2000 people.
  
  In the US it's defined as affecting fewer than 200,000 Americans, which on the high end works out to about 1 in ~~150~~ 1500.

Endometriosis misdiagnosis is common because it requires surgery to even get the diagnosis, and if you don't have insurance it's $25 000
As a man, I personally don't believe male doctors should be in charge of these types of medical conditions anyway, we lack the required organs to even begin to understand where the pain comes from, so we have no frame of reference when women talk about their internal issues. I told my girlfriend 5 years ago she had symptoms of endometriosis, and the male doctor at the woman's pavilion dismissed it. The female doctor at the woman's pavilion the town over that she switched to immediately, within minutes, on the first meeting said she was experiencing symptoms of endometriosis and that it's something they will monitor and consider.
It also seems like the cysts caused by endometriosis can be treated the same as regular ovarian cysts, so they see the symptom of it dissappear and just assume they got the diagnosis right the first time.
It's honestly kind of fucked up with just how common it is that it's dismissed so easily.
- I've actually had the opposite happen: my endo was diagnosed by a male doctor and he was great, but I've since gone through several consultants of both genders who just don't give a flying fuck. I wonder if it's the case that if your female doctor experiences their period as minor discomfort, then they might actually be more dismissive? So it's basically the luck of the draw in my experience, and it's so exhausting having to keep trying to get someone to care.
  Side note, the amount of times getting pregnant has been suggested is incredible. I don't want kids, but even if I did, using them as a 'cure' is a terrible reason to bring a person into the world.
- As a man, I personally don't believe male doctors should be in charge of these types of medical conditions anyway, we lack the required organs to even begin to understand where the pain comes from, so we have no frame of reference when women talk about their internal issues
  I was thinking about this sentence for a while before commenting and I ended up deciding that I disagree.
  For me, the issue isn't that the doctor is male. Even women that have been through regular GYN visits and even births wouldn't be able to describe their body parts and functions beyond just the outside parts - if they weren't educated about this. And most doctors are probably healthy people that do not have those kinds of symptoms so they would be able to reference it.
  So when we educate both male and female doctors about the human body of both genders, I tend to believe the knowledge is equal.
  But if that's the case, then it could mean a few things. First, it would mean that women are being misdiagnosed often by both genders. I've read many threads in TwoX in reddit before, and it seems to be the case - there are a lot of stories of female doctors who also dismiss women's symptoms. There are also stories of male doctors who did not dismiss them as well, so it's not really based on their gender.
  And secondly, it means the problems comes from elsewhere. It could be lack of research on female patients, or generally a lack of full understanding of women's bodies that contribute to it - I'm not educated enough to make a factually correct statement here. But this is my opinion: this happens because of our culture. Doctors are not immune to it, and in many cultures in the US and Europe, women are often viewed as dramatic, removed, vengeful, drama queens, exaggerating, and flat out attention seekers to the point of lying.
  This view is ingrained into many people from childhood. It is very hard for a person to even notice that the culture is skewing their point fo view on women. You can see it everywhere in media.
  Since that affects doctors (of both genders), I think they tend to use this skewed view of women when they diagnose them. I'm sure it happens subconsciously and they don't mean it, but that's what hapoens. And if you just assume the person complaining about stuff is lying or exaggerating and is just a drama queen, you tend to downplay their complaints, which usually ends up in a dismissal. Case in point - the girl in the article.
  So how do we fix this? We need to make sure more doctors are aware of this. Increase awareness of women specific illnesses, even rare ones. Find more ways to test women for possible causes for the symptoms they complain about. Increase difficulty for doctors to dismiss a woman's complaints (e.g. a doctor must refer to a second opinion first, for instance). Take women's complaints to the board (like Aston did in the article) much, much more seriously and make sure the responsible doctor is discouraged from repeating this behavior, and so on.

I started having severe and debilitating chest pain when I was 19. I would have episodes for 10-45 mins, just in the fetal position and not understanding what the issue was. I have always been a competitive athlete and even now, as a 31 year old I am super active. I understand why they didn't assume it was my heart, but no one cared to actually look into this for me.
I was told by numerous doctors that it was my anxiety that was causing the chest pain. I even had the principal at the school where I used to teach (even after telling her I was seeing a cardiologist) assume that the chest pain was due to anxiety. It wasn't until I was 25 when I was finally diagnosed with printzmetal angina.
Thankfully it's not life threatening and I have medication to prevent it (daily) and nitroglycerin if I have an attack. It's only really severe pain more than anything else, but wow, I was starting to think it was all in my head. What kills me about all of this is that my mother was diagnosed with the same condition only a few years earlier and I would tell doctors that and they still denied that I may have been suffering from the same condition.

I have endometriosis and it took me a long time to actually seek help. I was always told to suck it up. When I did get help, the first doctor did a laparoscopy and didn't remove any of the endometriosis. She wouldn't give me an answer when I asked why she didn't take it out. I went to her a year later for a very large and debilitating ovarian cyst. She told me to take Motrin, did a very rough exam, then left. That's when I found a different doctor.
This new doctor noticed my pelvic floor dysfunction and wanted to try physical therapy to see if it helped with the pain. She wanted to know how much was muscular and how much was the endo. Physical therapy worked well and my pain was manageable for about a year. Then it came back despite me doing my therapy exercises daily. The doctor did a laparoscopy and removed an ass ton of endometriosis. Apparently some had encased my left ureter and she had to do a separate type of procedure to free it. She even printed me out before and after pics of some of my guts.
The endo pain is gone now, but I have had some more ovarian cysts. I just started a different type of birth control to see if this one stops menstruation and ovulation. My last one didn't stop ovulation, which is why I got cysts.
Anyway, being taken seriously as a woman for health issues, even by women doctors, is so hard. I got lucky and live close to one of the best endometriosis specialists in the US. If I didn't live where I do, I might not have found a doctor who takes me seriously. I have a friend who is permanently disabled because a doctor treated her endometriosis with a medication that is known to absolutely wreck people. My friend wasn't informed of the risks and trusted the doctor. It took her 4 more doctors before she was able to get her endometriosis treated properly.
It's a shame women aren't taken seriously.
- Can I ask the name of the medication? My doctor thinks I have endo and wants to try a couple meds before considering surgery. She says surgery wont help anything anyway. I'm living in pain levels anywhere from a nothing to a please let me die, and I don't know what to believe. I'm also broke AF and have marketplace health insurance. My pain levels are so bad that I ruptured an ovarian cyst recently and never knew it, they found it after the fact by accident when they did an ultrasound but my doctor said that would not cause me to spend months in agony.
  
  I was on depoprovera for 5 years and only like 10% of women still ovulate on it. Depo is one injection every 3 months.
  I'm on norethindrone now and idk if it'll fully stop everything. I've only been on it for a month and it takes about 3 months for depo to lose effect. I take my Norethindrone daily at exactly the same time. I'm on the endometriosis dosage. There's a birth control dose and an endometriosis dose.
  I have always had really good insurance, so I have no idea if your insurance will cover it or not. :(

Doctor-patient power dynamics deserve so much more scrutiny than they get.
It's always heartbreaking to hear of somebody who died or continued to suffer because they couldn't convince the gatekeeper of care to examine them properly.

The number of times a woman friend of mine has had ridiculous difficulties to get diagnosed with something they obviously had boggles my mind. I have a friend with EDS who spent two years getting tests and traveling all over the state to see different specialists before she got her diagnosis. It’s infuriating to see, I can only imagine what it’s like to live with.
- It's a result of decades, even centuries of systematic medical misogyny. Studies were done on male subjects, research done by male scientists, and standards used by male doctors. Females were (and evidently still are) thought of as the same as men, medically. Obviously, this is incorrect, but ongoing research involving more female subjects does make me hopeful that medicine is turning over a new leaf.
  
  Unless you have a source for that second sentence I’m going to have to call bullshit on that, I’ve read probably 100s of articles on clinical trials and the spread of patients tested is usually close to even gender wise, if not with a very slight female bias, at least in the studies I’ve read. The problem isn’t from a lack of medical knowledge of how women work, it’s from misogynistic shit stain doctors that read these articles but still treat women in such a horrible manner systemically despite the literature being out there.
  Its more of a societal problem than a lack of knowledge of how women’s bodies work, but in my opinion that makes these doctors even more horrible people than if it were just a basic lack of knowledge of women’s anatomy, they choose to he terrible people despite the knowledge being easily available to them.

This is maddening, the thought that if that woman were a man, they could still be alive today. Crazy
- Depends. Lots of shit doctors out there who don't care avout their patient. I've seen guys go to a doctor with a problem, only to be barely checked, if at all, and sent home with an unhelpful prescription or advice.
  Plus gender-epecific conditions are poorly taught in med school, or to the wider public in general. Most members of the opposite sex rarely know about conditions affecting the other, or even their own. As a guy, I've learned about Endomitriosis because of youtube. But also I've learned that men have much worse symptoms with viruses than women, from a TV show.
  Thankfully there are many doctors who take their job very seriously, but it seems they are hard to come by, especially in the US.

I got covid March 2020 and it was basically just a bad cough when I was positive, but like two days after my cough went away I developed some issues with feeling dizzy and weak, but sometimes those feelings were a lot stronger than other times. When it was really bad it would feel like I was about to pass out soon. The fact that my symptoms weren't visible to others and that the tests showed I should be healthy made it easy for doctors to dismiss, and it was absolutely miserable. On my better days I would feel like a crazy person and ask myself if I'd been imagining the whole thing.
I've almost entirely recovered from the long covid, but mentally I'm still messed up from that experience. I feel pretty confident that I was not a hypochondriac in February 2020, but now I freak out over every stupid thing. If I feel some sort of pain and the cause isn't outwardly visible, I go through an extensive mental dialogue over whether I'm imagining it. At one point I had a reaction to a new medicine and I waited months to tell the doctor because I couldn't tell if it was in my head, while I was freaking out a little every time I thought about it. I really believe that I didn't used to be like this.
Being treated like this can add a lot on top of already existing misery. I know doctors are people too, and they don't have to believe me, but I wish they would have had the respect to pretend that they do.

As soon as I saw the symptom list I immediately thought "This sounds like EDS". But I see Zebras because I have EDS
- A friend of mine has it too and I recognised the symptoms straight away. Ridiculous how hard you have to fight for a diagnosis. EDS may be rare but it's hardly unheard of! I hope you're doing ok.
  
  Thanks. I luckily have a relatively minor case (chronic pain and joint laxity sucks, but I can hold a full time job).
  I'm just glad there is more awareness and more resources than a decade ago. I built the EDS subreddit, but I think I'm going to leave that to others on Lemmy.

I can personally attest to this, from my experience, as well as stories friends have told me. It is much worse with older male doctors, also as women age this type of treatment occurs more often. Also, black women get the worst of it, as many recent studies show. Mortality rates during pregnancy are terrifying.
- Do you mean Maori women get the worst of it?

Invisible Women
Interview with author

Just curious, after passing can others be allowed to reveal records for others to get more information and continue resolving things by family or friends?

I don't want to be too depressing, but the article is rather carefully unspecific as to cause of death. This makes me think she took her own life. :(

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