What if the doctors had listened to her?
September 20, 2018 9:07 AM   Subscribe

We just passed the four-month anniversary of her death. It was a loss we all saw coming, but grief exploded through us anyway. It is a powerful, relentless thing. It is wrong to wake up in a world where she no longer exists. It is wrong to watch our mother bend over her grave, our father talk about her in the past tense. It is wrong that we were four sisters, and now we are three. Her death is a hole in our bodies because a piece of us is gone. We are sad, heartbroken, and angry that she is gone — yes, angry too, because there was more that could have been done, and because we are not alone. [tw: cancer, death]
posted by perplexion (40 comments total) 36 users marked this as a favorite
Three quarters of the way into my freshman year I met with an academic counselor because I was struggling with my classes. She asked me what was wrong: were they too difficult? Was it the professors? Was something else going on? And I couldn't put any words to it besides saying that it felt like there was a mental 'block' whenever I tried to do anything, like whenever I tried to open a word processor or a code editor my mind was suddenly filled with static, and even reading, always the one consistent joy of my life, had become impossible.

She paused. Then she reached in her drawer and gave me a little slip of paper with the university's mental health crisis number on it.

I called that same day. The closest day anyone was available was in two weeks. I said that was fine. Then they asked if I had a preference as to the gender of my counselor. I hesitated. Then I said no.

I met with the counselor- a white-haired white man- and described the block, described how lonely and isolated I felt, how I was starting to feel like there was no point to living at all. He listened basically silently for an hour, and then said - and this was his exact wording- "Well, our time is up. The elevator is out the door- take a right, then a left."

It took me two years before I called that number again. For every class I passed in those two years, another was dropped or failed. I had completely given up on the idea of ever feeling happy again. I genuinely believed that I was simply not capable of existing the way that others were. The only thing that kept me alive was knowing that I did not want my parents to feel the pain of losing a child, or my young brothers to feel the pain of losing a sibling.

But I did call again, eventually. And this time, I got a young female intern in the last years of her PhD, who said that it sounded like I had depression and anxiety. And just knowing that- knowing that someone else thought there was something else going on, that I wasn't just lazy and fundamentally broken as a person- just that knowledge was honestly more helpful than any of the coping strategies we later worked on together.

I'm still not 'cured' of depression or anxiety, but it feels like I've made progress. And I sometimes think of where I could be right now, if I'd started two years earlier, when I first sought help. The money I would have saved. The friends I could have made, instead of being shut up in my room. The things I could have learned- what a relief it was when I could start learning things again and actually enjoy learning them. I'll never get those two years back.

But I'm still lucky. I'm very, very lucky. Because depression didn't kill me, and I still have the time to make up for those years. Becky doesn't.

I know now to trust my instincts. It doesn't matter how much experience that doctor or counselor has or how many patients he's seen. Always get a second opinion. If you know something is wrong, don't let anyone tell you otherwise.
posted by perplexion at 9:16 AM on September 20, 2018 [64 favorites]

Oh gosh and it's Kate Beaton (if the same).
posted by lokta at 9:17 AM on September 20, 2018 [3 favorites]

I didn't even notice this was Kate Beaton until I got near the end. Sad sad sad sad.
posted by joelhunt at 9:19 AM on September 20, 2018 [4 favorites]

But now they're recommending three years between Pap smears and pelvic exams.
posted by elsietheeel at 9:32 AM on September 20, 2018 [1 favorite]

It's a "he" doctor, though, isn't it. It's almost always a him. The ones that don't fucking listen.
posted by seanmpuckett at 9:43 AM on September 20, 2018 [18 favorites]

I knew this was Kate writing about Becky from the first line. I can barely see for the tears.
posted by scruss at 9:44 AM on September 20, 2018 [2 favorites]

But now they're recommending three years between Pap smears and pelvic exams.

My sister in law became a cervical cancer survivor at age 33. She had a clean pap the year before her diagnosis and was luckily diagnosed at an early stage only because she happened to become pregnant with her second child. Had they not decided to have another kid or if it took longer to conceive (or if she wasn't a wealthy cis hetero white woman with health insurance), it would have been years before her next pap, and possibly meant the difference between life and death.
posted by melissasaurus at 9:55 AM on September 20, 2018 [1 favorite]

The scientific understanding of cancer is changing and the idea that "the best protection is early detection" doesn't reflect reality. HOWEVER in Becky's case not only was a positive screen dismissed, but so were actual symptoms. Twice!
posted by muddgirl at 10:11 AM on September 20, 2018 [21 favorites]

I knew this had been happening from Kate Beaton's twitter and it was devastating to see Becky had died. This article is so, so necessary. There needs to be a fundamental overhaul of the doctor-patient relationship, especially when the patients are young women. The gender of the doctor doesn't even matter much, I've been condescended to by plenty of women, but there is unfortunately a societal perception of female paranoia and hysteria that might as well be taught in medical school.

Couple that with "ehn, female bodies are weird!" even from gynecologists, you have situations where cancer (or other less dire conditions) are missed. I had abnormal spotting for almost a year and shrugs from nurses and my obgyn blaming my cycle changing in my 30s, before I switched doctors, had a hysteroscopy, and found a uterine polyp that was causing the bleeding and the horrible periods I was experiencing. Everything was benign, luckily, but it might not have been.
posted by lydhre at 10:22 AM on September 20, 2018 [9 favorites]

The virus HPV plays a role in the development of most cervical cancer. If you have a cervix or you might ever transmit viruses to people with cervixes, look into whether you can get the HPV vaccine. In the US, insurance is most likely to cover the vaccine if you're female and under 26. At my most recent pap, I was told new research suggests HPV is transmissible through fingering/manual stimulation, so you can pass it around without having oral-genital or genital-genital sex.

If you have a cervix, you should get pap smears, regardless of gender. I know maintaining the plumbing and having it renovated are both hassles, but transmasc guys, we have to do one or the other.
posted by bagel at 10:31 AM on September 20, 2018 [13 favorites]

But now they're recommending three years between Pap smears and pelvic exams.

In the States?? Here in France it's still once a year!! Exclamation marks because wtf
posted by fraula at 10:40 AM on September 20, 2018 [1 favorite]

I found a lump in my breast at age 38 that turned out to be cancer. I had had a breast exam at my gynecologist's office literally three weeks before.

One of the main things I learned from the experience of cancer treatment is that a doctor is not necessarily an authoritative figure who knows what's going on and what to do about it. Doctors are people who go to school and learn about things and practice for a while, but in the end they're just like anyone else. Some of them are great and some of them suck, and even the best ones are sometimes only making guesses. I can't tell you how many women I've met going through treatment who feel uncertain about their doctor's recommendations but stick with them because well, they went to medical school. They must know what they're talking about.

I'm 41 now and feel like I'm only finally realizing at my core that we're all just muddling through the best we can, and there isn't some group of Real Grownups running the show somewhere. When you're a young person with health problems you don't realize this yet, that in our world there isn't actually anyone in charge. That somebody recommending your course of treatment might, in fact, be wrong. Too many women - especially young women -are in Becky's situation, faced with somebody with a diploma on the wall telling them they're fine, and believing it even when they feel at their core they aren't.
posted by something something at 10:49 AM on September 20, 2018 [31 favorites]

Three years in the UK fwiw, has been forever I think.

To me, how often across the board screening should happen is kind of up for debate - it's the fact that Becky was having actual symptoms that were dismissed which is awful. What a horrible thing for her and her family to go through, and how terrible to be left wondering how things could have been different.
posted by the cat's pyjamas at 10:58 AM on September 20, 2018 [4 favorites]

Our whole medical culture is sick. Doctors are abused by the system that employs them and take it out on their patients who they stop seeing as human beings after awhile. Everyone got so scared of opiates that pain isn’t seen as something that can or should be treated or even investigated. Doctors get on Twitter whining about patients who have opinions or knowledge about their own bodies. Because how dare they! If you haven’t done medicine at 3 am after having not slept for 8 weeks then obviously you have nothing to say to me that I want to hear. I had to stop following doctor twitter because of how upsetting it is to read. Maybe the pressure that we put on doctors is too much because it’s too expensive to train and hire as many as we actually need and that gives them a twisted outlook. Whatever it is the whole thing needs to change.
posted by bleep at 11:01 AM on September 20, 2018 [23 favorites]

But now they're recommending three years between Pap smears and pelvic exams.

It's not always the case that more testing is better. There are costs to false-positive results - not just financial, but also emotional and physical. Follow-up procedures can have complications. It's a question of the base rate (priors). It's a real issue in public health. So, I would want to see the reasoning for these guideline changes before assuming it was a bad decision.

This doesn't have much to do with Becky; in her case tests were done, but missed the cancer. Her symptoms were ignored and minimized, even after she was diagnosed. It's all so sad and maddening.
posted by Kutsuwamushi at 11:40 AM on September 20, 2018 [7 favorites]

In most Canadian provinces it's now a three-year schedule if and only if your most recent smears have been negative and/or you haven't tested positive for HPV DNA if you're over 30. If you get an abnormal Pap, though, the recommendations switch to screenings as frequently as every six months until you get a clear smear.

Prior to about 3-5 years ago, depending on which province we're talking about, asymptomatic women still recieved yearly Paps.

Our conservative screening schedules aren't the issue here, though; it's that her doctor potentially screwed up:

It’s worth mentioning that a year before her diagnosis, in 2014, Becky had a Pap and an ultrasound under the care of her family doctor, after an abnormal Pap smear. This doctor considered both a waste of time, and said she was fine. In 2015 that doctor’s medical license was suspended. Becky was never able to find out why. She tried to access the records of her 2014 ultrasound after her diagnosis, and they would not release them to her, and never would. There was no accountability, just a door that shut in her face.

This is the scary part. There may be a piece of paper sitting somewhere that held the key to earlier treatment and perhaps survival, but Becky and her family have been shielded from that. Most provinces don't have system-wide EHR; living in one that does is pretty eye-opening, like when you switch family doctors only to have your new doctor look up your old test results and find that your previous doctor wasted months of your time because they repeatedly ordered the wrong tests. We need better ways, nation-wide, to help patients hold their doctors accountable.
posted by blerghamot at 11:44 AM on September 20, 2018 [9 favorites]

But now they're recommending three years between Pap smears and pelvic exams.

This is the case in many countries--the UK and Canada, for instance. This is because there is not strong evidence that the benefits (in terms of improvement in detection) outweigh the very real costs of testing and in particular of false positives.

I hate to defend any aspect of the medical establishment's handling of reproductive health, and certainly not in this particular case, because, I mean, DUH, they are awful in so many ways. But I find it very frustrating when this topic arises to see how many educated people seem genuinely oblivious to the fact (which is discussed in the coverage every time some organization changes its screening recommendations for something!) that screening for many disorders itself has costs for the patient; that more frequent screening does not necessarily mean meaningfully better outcomes; and that recommendations for frequency of testing therefore should be based on the evidence available concerning its effectiveness in actually preventing or minimizing bad outcomes as against the harms it inflicts. Instead, we get anecdotes of a friend being diagnosed, which are not much different from arguing that because you had a good day gambling in a casino, it's a good way to make a living.

I had a likely precancerous lesion identified incidental to a CT scan that, I know now, really could not have been justified using evidence. Obviously, given that one takes both the good and bad luck in life, I'm glad that it was, but it was not rational to spend the money, subject me to the radiation, and then subject me to a lot of uncertainty and follow-up testing as to what the problem was (at any point along the way, the finding could've been downgraded to "nothing," because imaging of that particular organ is challenging) based on my reported symptoms (which had nothing to do with that organ, by the way--it was an incidental finding). I took the house like Rusty and Danny! But I could never have reproached that particular doctor if she had not ordered that scan.

That of course does not apply directly here, as this poor woman had both symptoms and a positive screen. I don't want to dismiss that, or to deny in any way the inadequacy of doctors' response to female pain generally and reproductive issues in particular. But the conversation's already taking the turn, so.
posted by praemunire at 11:44 AM on September 20, 2018 [15 favorites]

“Rebecca continues to be paranoid.” My god.
posted by Zonker at 11:48 AM on September 20, 2018 [14 favorites]

“Rebecca continues to be paranoid.” My god.

Especially egregious coming from an oncologist. Every cancer patient is paranoid, and rightfully fucking so. Before my Stage IA "curable" cancer I was the most laid back person in the world; now I'm paranoid about every single tiny symptom I experience. The hair on my thigh looks weird: my brain goes, "how could this be cancer-related?" I wrote an email to my oncologist just yesterday because my elbow hurts. He was, as always, patient and kind, reassuring me that tendinitis-type pain is not cancer.
But you know, he could be wrong.
posted by something something at 11:59 AM on September 20, 2018 [15 favorites]

Kate Beaton is an incredible writer and the medical indifference that killed her sister Becky is an obscene tragedy. Reading Kate's Twitter feed is like running through little bombs of love and brilliance and raw agonized grief and puppy photos, all swirled together.
a handful of drawings toward the end
A comic found in a drawer
Becky will always be the golden one
mom trying to make flowers grow on her grave
Dog vs tractor
posted by nicebookrack at 12:20 PM on September 20, 2018 [9 favorites]

Poor Becky. Poor Kate. What a sad, maddening story of medical incompetence, arrogance, and sexism creating a perfect storm.

Just last weekend, I listened to an episode of the excellent CBC medical show White Coat, Black Art about how increased breast density is linked to increased rates of breast cancer, BUT the density also camouflages cancer on mammograms. (Link goes to text article, but you can also access the audio there.) The really awful part is, women are not being informed about it due to sexism and paternalism:

[Dr. Paula] Gordon, who is the medical director of the Sadie Diamond Breast Program at B.C. Women's Hospital, added that cancer is "four to six times more common" in women with the highest breast tissue density, but researchers don't know why. In 1986, the BC Cancer Agency became the first provincial agency to do screening mammograms. From the very beginning, radiologists were asked to indicate on each mammogram if the woman had dense breasts and so they did. But there wasn't a directive to tell patients. "It's like somebody having high blood pressure and not telling them. No family doctor would do that," Gordon said.

"When I raised it at a committee and said, 'Why aren't we telling them?' they said, 'We don't want to make women anxious.'"

posted by hurdy gurdy girl at 12:36 PM on September 20, 2018 [11 favorites]

Oh, no, that's not the answer at all. The answer is "We don't want women to bother us with more questions and concerns and ask for more help diagnosing things, we'd rather they just quietly die."

Of course if some men had "dense testicles" that increased the incidence of TC it would be talked about in health class.

I... apparently have a lot of rage about incompetent, misogynistic doctors, probably left over from my mother's death from breast cancer over three decades ago.
posted by seanmpuckett at 12:49 PM on September 20, 2018 [13 favorites]

Don't they provide that notification now? I certainly got it. Or is state by state?
posted by praemunire at 1:07 PM on September 20, 2018

Don't they provide that notification now? I certainly got it. Or is state by state?

My doctor told me when I got an ultrasound to check out a lump; it was framed as "heads up, when you start getting regular mammograms, you might also need to get ultrasounds". (Which, as it turns out, my mom also has to do.) My guess would be that it depends on the doctor.
posted by damayanti at 1:09 PM on September 20, 2018

They do provide a notification now. At least, they do in North Carolina. I get a letter in the mail after each mammogram.
posted by something something at 1:13 PM on September 20, 2018

This is the case in many countries--the UK and Canada, for instance. This is because there is not strong evidence that the benefits (in terms of improvement in detection) outweigh the very real costs of testing and in particular of false positives.

Yeah - not to be the ninth person to chime in about this but there's been a movement toward relaxing screening guidelines pretty much across the board. For example I think it's no longer recommended to get PSA testing for prostate cancer over the age of 70 because even if you have the beginnings of prostate cancer at 70 chances are good something else will kill you before you have symptoms that make it worth getting surgery on your junk.

However, guidelines like this are made to get the best average outcome on a population level, so if you have reason to believe you're personally at risk by all means fight to get that across to your doctors.
posted by atoxyl at 1:48 PM on September 20, 2018 [2 favorites]

perplexion, I could tell that exact same story. I didn't get the help I needed until I was forced off of the student insurance and had to find someone else which was, hilariously, a very lucky thing. No one actually helped before then, not the doctor (I'd feel better once I was less stressed from the degree), not my advisor, who I trusted to tell my mental state to and ask for help, you know, like you're supposed to do. Instead I was told I wasn't trying hard enough. My new psychiatrist was legitimately and clearly angry that I had been treated the way I was.

I could tell a similar story about the allergist I went to who didn't believe me when I showed him a list of foods and emphasized I only thought they might affect me. When we did the prick test and the blood tests he was suddenly very agreeable.

And then there's the women doctors I've been lucky to see. The woman who listened to me describe my periods, how I would pass out, and helped me get what I needed. The woman who consulted with me about a chromosome I could have had that practically guaranteed me developing cancer early in life.

Seems like it's always the same thing over again. This story was heartbreaking. I wish that someone in a position to help had fucking listened to her.
posted by nogoodverybad at 1:48 PM on September 20, 2018 [4 favorites]

Don't they provide that notification now? I certainly got it. Or is state by state?

The breast density article hurdy gurdy girl linked to is Canadian.

From the article:
"Quebec is the only province that requires a woman's breast density information be given to her family doctor.

In other provinces, doctors might be given the info from a mammogram report, but they aren't required to inform patients."
So no, most of us probably aren't getting notified.

My best friend's Mom was diagnosed with breast cancer 5 years ago (single mastectomy, followed by another single mastectomy about a year later when it came back) and my boyfriend's Mom was diagnosed last year (chemo & radiation). I'm gonna go email my Mom and ask her if her doctor has ever talked to her about breast density.
posted by Secret Sparrow at 1:54 PM on September 20, 2018

God damn it, I knew who this was written by—and written about— before I reached the link. Now I’m going to read it, but it’s going to be hard.
posted by Songdog at 4:23 PM on September 20, 2018

There needs to be a fundamental overhaul of the doctor-patient relationship, especially when the patients are young women.

There's been suggestions that one of the root causes of anti-vaccination attitudes is that so many successful women have had bad experiences with doctors, that when doctors say 'vaccination for your kid is necessary and the preservative in it contains mercury, but don't worry it's fine' they've already blown their credibility.
posted by Merus at 5:56 PM on September 20, 2018 [11 favorites]

I just spent five years of my life in agony, being disbelieved by half a dozen doctors while evidence was obvious and documented and right there in my file... Gory (as in actually gory) details here. I was diagnosed with anxiety and hypochondriasis by a gastroenterologist who couldn't recognize a hernia when it was written up on a report in front of him. Years of my life wasted in agony.

Should I have told them that I'm gay? It seemed like it was need to know kind of stuff. Would I have been dismissed time and time again if they didn't know? Would I have been able to actually function for a couple of those years I lost? Would I have been treated with the same contempt?

There's no accountability; there are no consequences for misdiagnosis if someone isn't injured, no lawyer will take a case without permanent injury. Suffering, loss of income, loss of income potential, loss of faith in my own body let alone the medical establishment, those aren't worth enough to go after. I'm reduced to writing stern letters, or at least I will be as soon as I'm not sputteringly furious whenever I try to write about it anymore.

Profit has no place in health care. We pay for their profit with our lives. The profit motive corrupts the practice of medicine in ways that destroy the lives of millions of people every year, and we've somehow come to believe that this is inevitable. We have examples of functional health care systems worldwide to learn from. At least we did until the forces of profit started taking them apart too. But we have tons of models to choose from, and they'd all be less expensive than this avaricious bloodbath.

For the love of mercy, this has to stop.
posted by MrVisible at 6:32 PM on September 20, 2018 [11 favorites]

I spent 11 years bouncing from ER to Er to urgent care to doctor and back, trying desperately to figure out why my everything hurt so miserably. Eleven years of "We don't know what's wrong, but here's some drugs, now go away." When I was finally diagnosed with fibromyalgia, I started sobbing, right there in the doctor's office. He immediately started talking about how manageable it was, and how it wasn't degenerative, and all the things doctors say to distraught patients. I finally calmed down enough to explain to him that I felt like I'd been wandering lost in Siberia for over a decade, not knowing the language, or the customs, or the landscape, or where anything was. And he'd just shown up and said "Hey, there, friend, you look lost. C'mon, I'll show you the way home."

I've also spent the last three years dealing with unexplained severe weakness. As in, three and a half years ago, I was in the gym six days a week. Then within about a 4 month period, I started getting weaker and weaker. I haven't been able to walk more than a few feet unaided in three years. I can barely lift a twelve-pack of soda with both hands. On particularly bad days, it's everything I can do to get up from my recliner, transfer to a wheeled chair, and scoot over to my bedside commode. And nobody's been able to tell me why.
posted by The Almighty Mommy Goddess at 7:27 PM on September 20, 2018 [10 favorites]

(Because it may be useful information to women reading this, the breast-density notification is indeed state by state, so if you are not in a state that mandates it, it may be worth direct inquiry after your next mammogram.)
posted by praemunire at 9:41 PM on September 20, 2018 [1 favorite]

I've been following Kate Beaton's work for more than ten years now, since the LJ days of Hark! A Vagrant, and like some of you I also knew this would be Kate writing about Becky before I even clicked the link; it's been heartbreaking following their family's story on Twitter in recent years.

I'm in the middle of my own maybe-cancer-scare at the moment, and in some ways I'm hugely fortunate - I have great private medical coverage through work even though I also live in a country with socialised medicine. I've been seen swiftly, had followup tests booked urgently and everyone I've met has been very kind; it's all been much nicer than the equivalent process via the NHS would have been. They're taking it even more seriously than I'm taking it, which is mildly freaking me out, but I'm also grateful this is the case because I'm not used to being believed in medical settings.

I've experienced severe and mostly-unremitting mental health problems since childhood; nearly twenty of my nearly thirty years alive have been consumed with misery and suffering because of this, and I've had much worse luck trying to access meaningful treatment and being taken seriously about the impact this illness has on my quality of life. It doesn't help that I present as pretty high-functioning - part of the pathology of growing up in an abusive home where my only worth was measured by how well I performed in public at stuff like academics and obedience; being openly mentally ill in that household was basically forbidden, so I'm very good at presenting a neutral, stoic front even when everything inside is screaming and raging and falling to pieces.

I have all kinds of compound trauma stemming from that early childhood trauma - sexual assault that was inevitable in retrospect given that I was raised to believe my body was hideous and had no value, and repeated medical trauma from repeatedly not being taken seriously and not receiving adequate treatment pretty much every time I've attempted to seek help on the psychiatric side. The only (partially) effective treatment I've ever experienced is treatment I've paid for out of pocket, and that shit is expensive and I can't afford as much as I truly need. I do not feel I have ever received adequate medical care from the only system I have access to (because of course the fancy medical insurance doesn't cover any pre-existing or chronic mental health stuff), for what has been the defining sickness and drama of my life overall. I have no idea how much of this lousy experience is associated with presenting as female, but I suspect it's at least some.

If I do have cancer, I have no doubt that I will receive excellent medical care - the fancy insurance takes care of this and offers benefits way above and beyond what the NHS can offer, like a dedicated oncology nurse and access to new or experimental treatments that aren't available on the NHS. If I have cancer and I die, I will have lived a short and profoundly unhappy life by many people's standards. If I have cancer and I live, I will have added another serious trauma to my already-significant lifetime trauma burden. And if I don't have cancer, I'll still have to live with the knowledge that the medical profession cares so much more about a possible cluster of cells gone rogue inside me than they do about my entire miserable experience of consciousness, my shitty holistic experience of being alive in the world.

While I would definitely prefer not to have cancer right now and I'm keeping my fingers crossed over the next few weeks, none of those options sound especially good when I lay them out plain like that.
posted by terretu at 11:06 PM on September 20, 2018 [5 favorites]

i begged for help for 9 months and being was told i was just fat and i should take up hiking, despite having literally textbook symptoms of heart failure. a cardiologist told me there was no way there was a problem with my heart. i pushed and pushed my gp for an echocardiogram and finally, because my heart was so close to no longer functioning, i got direct-admitted to the cardiac ward of the local hospital. i was still treated kind of poorly because i was fat and the youngest one there and so obviously it was my fault, but at least i was getting treatment. maybe my life expectancy would have been more than 5 years if they had started treating me when my heart function was higher and when i wasn't quite so "almost dead."
posted by misanthropicsarah at 10:11 AM on September 21, 2018 [10 favorites]

It's a hard and specific thing, the knowledge that no matter how hard you try, how much of an informed patient you are (but not too informed! Don't want to seem "paranoid" or "drug seeking"), how much you do everything right to the fucking letter as if there is a right and wrong way to seek help for a deadly illness, one wrong turn could have killed you. To see this article and know to how many people I care dearly about and how many people I don't even know and most of us women would just. Be dead. One wrong turn. The sheer horror and easy imaginability of it. I am furious. I am furious for Becky and Kate and furious with the doctors who thought my life was worthless, furious there is no easy way to fix this and more beloved humans are just going to die. I hate it.
posted by colorblock sock at 11:48 AM on September 21, 2018 [7 favorites]

What a horrible sad awful story.

I know someone who's been through a horrendous, near-fatal medical nightmare where doctors told her it was all in her head, said self-contradictory things, and so on. A friend of hers did scores of hours (unpaid of course) of medical research, putting together clues, and was the first person to hit upon a likely diagnosis. But of course the patient had to be cautious about actually bringing up any of the stuff she and her friend had learned independently -- she learned that "when I looked it up, I saw studies say [treatment] is likely to work" caused all manner of negative reactions.

But it turns out that if you lie and say "my friend said this worked for them," they're fine with that, and will cheerfully proceed and pursue that line of investigation.

(I've been grateful for siderea's analytical posts on healthcare systems as I try to reflect on physicians' habits regarding triage, diagnosis, and respect for their patients, e.g., on one approach to trying to fix under-triaging trauma patients, on which patients get their schedules respected and which don't, on the hurry-up-and-wait dance of appointment-making, and reprinting a relevant medical mystery piece by Matthew O. Dumont, MD.)
posted by brainwane at 12:23 PM on September 21, 2018 [8 favorites]

I was happy to read on the CBC today that starting in mid-October, women in British Columbia will receive breast density info with their mammograms. BC will be the first Canadian province to voluntarily share this info with patients.
posted by hurdy gurdy girl at 11:23 AM on September 24, 2018

Postscript: Kate Beaton has ended her popular humor webcomic, Hark! A Vagrant. "2016-2018 were very difficult years in a personal sense, and emerging on the other side, I feel like this is a project that has run its course."
posted by nicebookrack at 8:53 AM on October 10, 2018 [1 favorite]

Kate Beaton had fallen off my radar, and I feel so bad for her that this was what was happening.
posted by Lentrohamsanin at 1:20 PM on October 10, 2018

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