Transcript
MIC CAVAZZINI: A warning that in this podcast there is mention of explicit sex and also sexual trauma. Please consider whether it’s appropriate for everyone listening. Welcome to Pomegranate Health. A podcast about the culture of medicine. I’m Mic Cavazzini, for the Royal Australasian College of Physicians. In the last episode we talked about gendered outcomes in the diagnosis and treatment of heart disease.
In fact, gender has an impact on cardiovascular health even before people come into contact with the health system, according to Associate Professor Adrienne O’Neill, Director of Heart & Mind Research at Deakin University. In a recent review for Heart, Lung and Circulation she discusses the fact that girls aren’t encouraged to participate in sport in the same way boys are. Girls also face additional body image pressures that might turn them off running tights and swimmers, and even into adulthood many feel unsafe exercising in public spaces. Boys and men too face social expectations that affect their wellbeing. They experience more peer pressure to smoke and drink, and must be seen to be stoic in the face of pain or emotion. Gender can therefore be considered a social determinant of health, just like socioeconomic status or education.
I use the words gender and woman here to signal the way a person presents to or is identified in society. Where biological sex is relevant I will tend to use the word female and this is not meant to exclude any person with the same sexual and reproductive organs. These organs have been at the centre of human myth since civilization began, take the so-called Venus figurines that date back 35,000 years, with their exaggerated breasts and hips. Or the pre-Vedic worship of the yoni, a stylised representation of the cervix and womb.
But female genitalia and their function have also been stigmatised by many societies. In the 2019 book, Pain and Prejudice, Guardian news editor Gabrielle Jackson talks about the biblical proportions of the taboo around menstruation. For example Leviticus 15:19 which states that a menstruating woman “should be kept apart for seven days, and anyone who touches her shall be unclean until the evening.” According to Gabrielle Jackson, this kind of cultural baggage means that women are often ashamed of and dangerously naive about their own health.
GABRIELLE JACKSON: Yeah, I think that shame and stigma and taboos are a really big part of the story of women’s health. And it’s not just in one society or another, it’s prevalent throughout. And it means that women and girls especially are more reluctant to talk about things involving menstruation or sexual pain. It also means that myths are passed on generation to generation. This is really prevalent in diseases like endometriosis, or chronic pelvic pain, where the girls often get told by their mothers or their aunts or their grandmothers, “Oh, I had period pain like that, that’s normal, you just have to put up with it”. And there’s a huge delay in diagnosis. But studies have shown that half that delay is down to other people not reporting symptoms, because they don’t know for a long time that it’s actually not normal, because it’s just not talked about enough.
And the Eve Appeal, which is this awesome gynaecological cancer charity in the UK, did some studies, and found 60% of women could not identify their vulva on a diagram. And 44% couldn’t identify a vagina. I think we should all be really shocked and ashamed about that. It’s appalling, and it shows the lack of education we’re giving to people, even in schools. And if you can’t, you don’t even know the names for your genitalia, how do you go to a doctor and tell them what’s hurting? The Eve Appeal told me about a doctor who works with them—she was talking to a patient for 10 minutes, she thought she was talking about her urine, her urinary tract. And it turned out, only after a full 10 minute conversation, that she was talking about menstruation. She just could not name what she was talking about. And the doctor was baffled.
MIC CAVAZZINI: And that’s modern times as well.
GABRIELLE JACKSON: That’s modern times, it’s in a modern society.
MIC CAVAZZINI: You give an example from the Tampax commercials in the ’80s.
GABRIELLE JACKSON: Oh, that was the first time ‘period’ was said on television. It was Courtney Cox. Can you believe that?
MIC CAVAZZINI: And then even as recently as 2015 there was a controversial poster or something in the New York subway.
GABRIELLE JACKSON: Yes, they’d tried to, they tried to put an ad about period underwear, and it was basically taken down for being offensive. Meanwhile, on the very same train, there was an ad for breast augmentation, there was an ad for that – what was that book, that was like semi-pornography that everyone in the world read, Gray something?
MIC CAVAZZINI: Oh, gosh, 50 Shades.
GABRIELLE JACKSON: 50 Shades of Gray. And you know, there was like semi-auto erotic pictures going on. So it’s OK for women to be objectified in advertisements, but it’s not OK for women to talk about their natural bodily functions. There is still stigma about it. The absolute shame and embarrassment of a tampon falling out of your handbag. You know, people still can’t ring into work and say “I have got really bad period pain today”. That is not something that happens anywhere.
MIC CAVAZZINI: And in November last year, Scotland became the first company in the world to offer pads and tampons free to anyone that needed them. Incredibly the South Australian government just followed suit, after lobbying from two university students who started a social enterprise called Taboo. 15 to 25% of girls and young women have struggled to access period products, and not just because the costs are around $15 a month. The legislation was also intended to counter the embarrassment that might deter some young women from seeking these products.
GABRIELLE JACKSON: Isn’t that sad? There was this case that I’ll never forget in 2016, an indigenous woman was fined I think $500 in Western Australia for stealing a pack of tampons that cost $6 or something. And she said that she was stealing them for someone who was too embarrassed to buy them. So you know, that is such a shame on the whole of society, I think.
MIC CAVAZZINI: And the British surveys showed that almost half of respondents had missed school because of their period. This is something you know in the book as well, the amplification of inequity because of this.
GABRIELLE JACKSON: Yeah. You know, once you start missing school every month, you’re missing lessons, you fall behind, you lose confidence, and you lose those social connections. It really has so many ongoing costs to your wellbeing and your opportunities in life.
MIC CAVAZZINI: It’s not just younger women who face this kind of judgement about their reproductive functions. Menopause has been given the same sort of treatment well into the modern age. In 1963 gynaecologist Dr Robert Wilson began an academic article with the words, “The unpalatable truth must be faced that all postmenopausal women are castrates.” He went on to describe the physical “stigmata” of “Nature's defeminization” and even shows an unsolicited photo of an older woman in public with the caption, “Typical appearance of the desexed women found on our streets today. They pass unnoticed and, in turn, notice little.”
Of course, according to Robert Wilson “a man remains a man until the end…. It is not unusual to see an erect man of 75 vigorously striding along on the golf course,” Having characterised menopause as a sort of disease state, Wilson went on to promote its cure in the book, ‘Feminine Forever.’ By 1975, the oestrogen replacement therapy marketed as Premarin had become the 5th best-selling prescription drug in the US. Three decades later it turned out the book had been funded by the drug’s manufacturer.
Gabrielle Jackson argues that the same sort of careless commercialism drove the recent vaginal mesh tragedy. If you didn’t follow that story here’s a potted version of events. Small meshes known as mid-urethral slings had previously been used successfully to treat urinary incontinence. Johnson and Johnson and other companies then found the technique could be used to treat pelvic organ prolapse and this was approved by the Therapeutic Goods Administration in 2003.
But that application requires a much larger piece of mesh and more points of fixation which increases the risk of erosion and infection. Once the mesh is embedded in the tissue, removing it can then damage the bladder or bowel and as many as 15% of recipients of the mesh reported adverse effects including incontinence and severe pain that impaired walking and sexual intercourse.
It was only in 2012 that most gynaecologists stopped using the mesh and it took several years before a reckoning was made of what went wrong. The TGA hadn’t required any clinical trials for approval and didn’t implement any sort of database to track each individual implant, as there is for hip prostheses. There wasn’t even a unique Medicare number for these surgeries that would allow some idea of how many of them took place. The best estimate, according to Associate Professor of Urogynaecology Christopher Maher, is that it was somewhere between 30,000 and 40,000 in Australia. Professor Maher describes the fast and loose rollout of the device as “a collective failure of both the TGA and specialists.” Gabrielle Jackson thinks it demonstrates a double standard in quality and safety for women’s health.
GABRIELLE JACKSON: As you say, often things can get approved off the back of similar products. I don’t have a problem with that. But this was a different usage and people weren’t warned about the risks. But, most of all, women spoke up about this and no one would listen. Hundreds of people complained to medical regulators, not just in Australia but all around the world, and people would not listen to them. You know, if there was a mistake made, then people complained and it was taken seriously and fixed quickly, that would be one thing. But that is not what happened.
MIC CAVAZZINI: Some hospitals were performing trials under the guidance of their own ethics committees, but you think it was more than a classic case of optimism bias around the new therapy?
GABRIELLE JACKSON: Yeah, they wanted to make money off women’s bodies and they didn’t bother to find out about the consequences. I just can’t imagine something like that happening to men’s bodies, to men being incapable of having sex because of the pain and no one listening to them. I think the whole thing was summed up by the French doctors who, when they were confronted about this said, “Oh well, what does she want me to do? Suggest anal?” They suggested fellatio too. They didn’t suggest oral sex for women, only for men. You see they can’t imagine a woman’s sexual pleasure. All they could think about is the reason a woman has the sex is to give a man pleasure.
MIC CAVAZZINI: Well, I found that interesting, actually, and that letter between some French gynaecologists came to light and was seen as very scandalous. The doctors themselves were expressing their discomfort at talking about a woman’s sex life. And one of them said and I quote “If you’d suggested sodomy, fellatio, clitoral stimulation, the G-spot with a patient, you would very quickly be treated like some kind of sex maniac or pervert”. I take that to suggest that a gynaecologist is expected to stick to the clinical and the mechanical, and not stray into the terrain of a sex therapist. I can imagine a lot of their patients would be uncomfortable covering that ground with their gynaecologist as well.
GABRIELLE JACKSON: Look, I am not into doctor bashing, I think doctors have a really hard job, and I do feel sorry for male doctors having to have conversations with women about their sex lives, given the society we live in. And I think that we have to accept that sexuality is part of one’s overall health, and that doctors should be able to ask about those problems. And it shouldn’t be shameful to talk about those things. And maybe there needs to be some training for doctors in how to do that sensitively. Maybe they can’t help and they need to be referred to a pain specialist. I can see that it would be a really hard position.
MIC CAVAZZINI: In Gabrielle Jackson’s book, the vaginal mesh story is just one example of the following throughline. As she writes: “Women are in pain, all through their bodies…. But women’s pain is all too often dismissed, their illnesses misdiagnosed or ignored…. Women are treated as unreliable witnesses to their own health, while diseases that mainly affect them are under-researched.”
Gabrielle Jackson speaks from personal experience after developing endometriosis in her mid-twenties, a condition where uterine tissue implants other pelvic organs. Endometriosis occurs in ten percent of women of reproductive age, and is the second most common gynaecological condition. Yet Gabrielle Jackson suffered years of pain before receiving a diagnosis that could guide her treatment.
GABRIELLE JACKSON: So I’ll try to make it short because it’s a really long story, but yeah, I had really bad period pain from my early teens. It got really hard to manage it around 15. I went to see many doctors. And I had a female GP, who I really liked, for years, who told me, “Some women have bad period pain, you have to live with it. And basically, told me I was a whinger.
And eventually when I was 22 I said to her, “Actually, this is not normal, I don’t see anyone else passing out every month, like vomiting, having diarrhea every month, not being able to get out of bed, go to uni for days every month. I want to see a gynaecologist.” She gave me this referral and I was very lucky that he just happened to be quite an expert in endometriois, and he was a very caring man, and he was also a skilled excision laparoscopic surgeon. So I had really good surgery, and I felt a lot better for a long time with how he helped me manage it with the pill and various things.
MIC CAVAZZINI: Endometriosis itself, was described a hundred years ago, you say in the book, but only now it’s starting to be considered a real condition. But it does have a histological diagnosis, so why is it still so hard for women to get that definitive diagnosis?
GABRIELLE JACKSON: So there’s lots of issues with endometriosis. It can only be definitively diagnosed by laparoscopic surgery, and that’s an invasive surgery. And no doctor wants to just do invasive surgery just looking for things. You know, there’s no easy test, and part of the reason is because we don’t know enough about it because we haven’t studied it enough. And so, I went through life not knowing what endometriosis in its entirety was. I didn’t understand that my bowel problems were related, I didn’t understand that my headaches were related, I didn’t understand that my poor sleep and anxiety and the dizzy spells, as I said, were all really, really common symptoms of endometriosis.
And it wasn’t until I went to this patient conference as a journalist, and I just ended up in tears when one of the researchers from Sydney Uni got up and said that women with endometriosis are 180 times more likely to have chronic fatigue than other women. I actually had never told anyone in my adult life that I’d been diagnosed with chronic fatigue syndrome, because someone at uni told me it was a made-up disease.
So I got myself a referral to him pretty quickly afterwards, and he said to me, “Tell me about your life. Tell me about every symptom you have whether you think it’s related or not.” No doctor had ever said that to me before. And gynaecologists aren’t pain experts, that’s not their training and that’s not their fault, it’s that just the way Western medicine has been established means that the body is separated into these silos. Chronic pain doesn’t work within those silos.
MIC CAVAZZINI: These silos Gabrielle Jackson talks about are an unfortunate consequence of medical specialisation, and as we’ll talk about in the next episode, the funding model isn’t especially conducive to the “slow medicine” required to work through such problems.
You see, while the disease tissue in endometriosis can be surgically excised, that relieves symptoms in some people only. Others continue to experience chronic pelvic pain even in the absence of evident pathology. Chronic pain is thought to develop when centres in the brain amplify representations of pain. The same sort of thing happens with temporomandibular joint pain after an acute injury or inflammation. Over the short term, pain prompts you to nurse those injuries back to health, but if it carries on for no good reason it can become debilitating.
And it’s not just pain pathways that can undergo this maladaptive reinforcement. Say an infection of Epstein-Barr virus causes fever, inflammation and fatigue. If the aches and lethargy linger once the infection is gone you might be described as having chronic fatigue syndrome or fibromyalgia. Likewise the smooth muscles of the gut can remain hypersensitive long after a gut infection has resolved. And in a condition known as postural orthostatic tachycardia it’s the autonomic wiring that’s gone amiss.
Such conditions would once have been called “medically unexplained” or “contested” illnesses. Now they are described as functional disorders, although they still get saddled with the perception that they’re just psychogenic. There’s nothing imaginary about neural plasticity, but as there aren’t any clinical markers for it diagnosis relies almost entirely on a patient’s self-report and how much credibility it’s given.
The reason this conundrum is relevant to today’s podcast is that around four out of five patients presenting with such conditions are female. Population-based studies have shown an excess prevalence in women around 6 percent for common forms of chronic pain. As you’ve already heard, these syndromes rarely present in isolation, and there’s a pool of ten that co-occur so frequently they’re known as Chronic Overlapping Pain Conditions.
A large population survey in the Netherlands showed that it was only at adolescence that boys and girls start to diverge in their rate of pain complaints. Without doubt there is nature as well as nurture at work and there’s increasing evidence for hormonal and immunological factors behind this. What I want to focus on, though, is not the biology, but the role that gender plays in the way these conditions are framed.
Kate Young of Queenland University of Technology interviewed GPs and gynaecologists about what it was like treating women with pelvic pain caused by endometriosis. She says they often started by distinguishing “good patients” from “difficult patients”. Good patients did what they were advised and were accepting when told nothing more could be medically done for them. Difficult patients supposedly made endometriosis “the centre of their biographical narrative” even when the clinician didn’t think the disease was bad enough. I asked Gabrielle Jackson what she made of this characterisation, and what else she learnt from talking with Kate Young for her book.
GABRIELLE JACKSON: The problem is that chronic pain patients have had so much pain for so long, and when you suffer like that, it becomes exhausting because it’s hard to concentrate. The pain might not be so bad that you can’t work, so you can still go to work, it’s just like a dull ache or whatever, but the act of concentration is a bit harder when you are distracted by pain, and you get this brain fog that everyone talks about.
So, when you get to the doctor’s office, yeah, you might be difficult and you might be frustrated and you might be very emotional, because your defences start to crumble when you’re that exhausted and everything’s a bit generalised, and doctors want you to be specific because that helps them. But they tend to not trust the accounts that the difficult patients give them, which is a problem, because those difficult patients are probably the ones that need their help the most.
MIC CAVAZZINI: Yeah. And even worse than that label of a difficult patient is the heartsick patient, suggesting that they drain the doctor’s time and energy but refuse to get better. And these labels are dangerously sticky even when you’re sure there’s something behind the symptoms that can be the default that the doctors and nurses go to. You had an episode in a presentation to an emergency room that didn’t go too well. Do you want to tell us about that?
GABRIELLE JACKSON: Yeah. I had had three days of just excruciating bowel pain, and I couldn’t sleep. The third night I was so distressed that I – and my partner’s a doctor, and he wasn’t there. And he knows me and knows that I can manage my pain quite well. And he said, “Look, it’s been three days, this isn’t like you, I think you should just go to the hospital.” So, I did and as soon as I said I had endometriosis and started talking about my condition, they just totally stopped listening to me. The intern went away and spoke to the consultant and came back and said, “Oh, the consultant says it’s probably just your endometriosis so you’ll have to make an appointment to see your gynaecologist”. And I said, “I can’t just ring my gynaecologist and go and see him today. Like, I am in so much pain for three days, do you think that’s normal?”
MIC CAVAZZINI: And by this stage you knew what your chronic pain was like, you’d had it for years.
GABRIELLE JACKSON: Yeah, I had it for 20 years. And I asked to see the consultant—he would not come and see me. She came back and he’d written me a referral to a private ultrasound clinic to test for like, appendicitis, and all these life-threatening conditions. I said, “I’m not an idiot. Like, you think I just want to have a test for fun. I’m actually in pain.” And then I fulfilled the hysterical woman stereotype by, like, yelling at the intern. But they did not even do any kind of examination. I said to the intern, “You haven’t even examined me, there could be something really wrong with me,” I could have had a bowel obstruction, you know. And so she kind of did a perfunctory abdominal examination…
MIC CAVAZZINI: I’ve read about a dozen patient narratives and they seem to fall into three clusters. The first are the delayed diagnoses of conditions that primarily affect women, so like your experience with endometriosis and there are similar stories about rheumatoid conditions, where there isn’t enough research into them.
GABRIELLE JACKSON: – autoimmune conditions, yeah.
MIC CAVAZZINI: Yeah. The second cluster of stories are those from people who can’t be diagnosed with an organic disease, but there’s some underlying functional disorder or chronic pain and often compounded by the sense that the symptoms are, not taken seriously. And the third cluster are the kind of scenarios that you just described, where the patient presents with pain or other symptoms that they know are unusual but they’re not investigated as thoroughly, because the cause is assumed to be functional or anxiety. Is that a helpful schema for picking apart those –
GABRIELLE JACKSON: I think so. Yeah, absolutely yeah.
MIC CAVAZZINI: – because yeah, I think there are different types of cognitive biases at each stage. So, a quantitative demonstration of that third cluster is a 2006 simulation study in the US where junior doctors were given written cases of patients presenting with chest pain, shortness of breath, heartrate irregularities. And in the baseline study the doctors largely agreed that there were organic explanations for these symptoms, and 78% agreed diagnosis of coronary heart disease was likely. 78% for men and 61% for female patients.
In the second study, the patients’ symptoms were described as having been brought on by work-related anxiety, and that the patients were concerned about their health. And in this scenario, the diagnosis of putative CHD for female patients dropped to 17%. So, suddenly in women but not in men it was assumed to be psychogenic. So this—you came across a few other studies like this that suggest women have to pass a higher burden of proof to show that they’re really sick.
GABRIELLE JACKSON: My partner tells me he sees this all the time. Even in young interns, he sees young people diagnosing women with anxiety, without doing any investigation. Like, I can’t even tell you how many women have told me their stories of things like this.
MIC CAVAZZINI: I have to say some of the stories, which are told as examples of sexism, were actually more peculiar scenarios such as primary ciliary dyskinesia, which affects one in 10,000 people. Another women was diagnosed with Long QT syndrome only after ten years of dizziness and fainting, but that doesn’t always show up on ECGs.
And there’s even a story you give in the book of a young woman, and I quote “Nearly died of a ruptured ectopic pregnancy after being dismissed by three doctors”. But actually, I went to the book that you refer to [Jerome Groopman MD interviewing Pat Croskerry MD in "How Doctor's Think" (2009, Houghton Mifflin, p69-72)] and the authors say that it was an example of this error where everything’s being done and the doctor doesn’t think they can add any more investigation, rather than her not being investigated because she was just a “hysterical woman,” in inverted commas.
GABRIELLE JACKSON: I mean, of course, sometimes there are clinical reasons. Like, if a man – this is what my partner always says to me – if a man comes in with crippling abdominal pain, it’s like one of, don’t quote me on the figures but he says something like there’s only like six things it could be, and five of them are deadly. If a woman comes in with crippling abdominal pain, there’s 200 things and only five are deadly. So like, you know, there are clinical reasons that doctors act faster sometimes. You know, no one thinks Medicine’s an easy job and no doctor can know everything about the human body. But there are some really fairly common diseases, like endometriosis. If ten percent of people have a disease, doctors should, you know, it should be on their radar.
MIC CAVAZZINI: The reason I’m sort of playing devil’s advocate is not to mansplain the issue away but to separate which issues are diagnostic reasoning or systems errors, because each of those things require specific changes and interventions in themselves, and specific training in themselves. If it was all just sexism, then you could probably hire consultants like the government did to improve corporate empathy.
GABRIELLE JACKSON: Look if it was all just sexist doctors, I think it would be much easier to fix.
MIC CAVAZZINI: Yeah. There’s even a study, a 2008 study in the journal Academic Emergency Medicine, it’s often cited in these accounts as proof that women’s pain gets systematically dismissed. And the researchers from UPenn Teaching Hospital found that women were around 20% less likely than men to receive opioid analgesia than men, through an admission for acute non-traumatic abdominal pain. But the authors weren’t clear that this was sexism, because they found no gender difference in patients over 50 or in rates of non-opioid analgesia. The authors suggest maybe there weren’t enough private examination rooms in those hospitals so the pelvic examination was delayed in a busy ED. That could be a design factor that has a gendered outcome. So the scenarios are much more complex, sometimes.
GABRIELLE JACKSON: Sometimes they are, but often they’re not. The reason that study has taken off like it has is because it just rings true to so many women. I’m not saying we should not investigate the data well, it’s just that it resonates because you either have had that experience yourself or you know someone who has. And I don’t think the idea of the hysterical woman has really left medicine. And that’s not just a problem in medicine, that’s a problem in society. Like, MeToo was all about society not listening to women. And so we can’t expect medicine to be like this totally different phenomenon within the society we live in. We, as humans, even female doctors, often don’t listen and trust women’s accounts of their health in the same way that we trust men’s accounts of their health.
MIC CAVAZZINI: In preparing this story, I went searching for “hard data” to show how systematic this bias might be. There was a very thorough audit from 480 US hospitals published last year which showed that neither gender or ethnicity predicted opioid prescribing for appendicitis or gallbladder disease. Encouraging as it was, I didn’t know how to weigh it against the lived experience of so many patients.
So I made a point of reading all the testimonials I came across. There was collection of letters in the Atlantic titled “Misunderstanding women’s pain” which captured over and over again the patients’ humiliation at being asked if they weren’t simply anxious about their health. One woman who turned out to have gallstones was told she just needed a bath and a massage.
As heartbreaking as these anecdotes were, I still found myself defending the health professionals involved from the accusation of “sexism”. Maybe they were just guilty of availability bias? You see, there is this cruel coincidence that anxiety disorders are often co-morbid with chronic pain, and many of the letter writers revealed as much.
But the account that struck home with me didn’t contain any such red herrings. The patient suffered for 2 hours in ED before a CT scan finally revealed an ovarian torsion that needed urgent intervention. As I read, I realised with shame that I was taking the story more seriously because it was written not by the patient but by her husband. I was demonstrating in real time the prejudice I was reading about. The writer captures the mood powerfully with the words, “Every nurse’s shrug seemed to say, “Women cry—what can you do?”
This stereotype of the hysterical woman goes back at least as far as the 4th Century BC when the Hippocratic authors described the uterus or hysteron as “the origin of all diseases.” And medics across Europe performed oophorectomies as a treatment for hysteria right up to the end of the 19th Century.
Around that time US physician Silas Weir Mitchell was the first to give a neurological explanation for hysteria and for a sort of nervous exhaustion he called neurasthenia. Here are some more lines from his 1885 lectures that sound like they could have been written today.
“Perhaps no cases are more common in general practice, none more annoying, and none more dreaded than those of hysteria.…we meet in practice a growing class of disorders in which change of social circumstances, love affairs, disappointments, and what the French call vies manquées, combined with physical accidents to create invalids, who unite neurasthenic states with a bewildering list of hysterical phenomena.
GABRIELLE JACKSON: These are the “bed cases” the broken-down and exhausted women, the pests of many households, who constitute the despair of physicians, and who furnish those annoying examples of despotic selfishness, which wreck the constitution of nurses and devoted relatives…They weary doctor after doctor, go helplessly through various cures, and at last end in therapeutic inactivity, or find a refuge in homeopathy, which promises a pill for every symptom…
… these cases have usually been women in middle life, and in easy circumstances…. Women in good condition, fat and ruddy, with sound organs and good appetites, but ever complaining of pains and aches, and liable on the least emotional disturbance to exhibit a quaint variety of hysterical phenomena. For these women there is usually no cure, you will treat them in vain.” Oh, my God.
MIC CAVAZZINI: Does that sound like a familiar story?
GABRIELLE JACKSON: Yeah. I mean, that is what people believe. It’s not just doctors who believe that, it’s lots of people in society.
MIC CAVAZZINI: Yeah, Kate Young writes that endometriosis was for decades known as a career woman’s disease and, similarly, in a 1988 article in the Journal of Allergy, chronic fatigue syndrome is in part attributed to, and I quote: “Unachievable ambition, poor coping skills and somatic complaints, particularly in educated adult white women.” Yeah, that’s –
GABRIELLE JACKSON: It’s infuriating because, actually, what we do know is that chronic pain is much more prevalent in women from lower socioeconomic backgrounds, but they don’t have the time or money to doctor-shop and to insist on treatment. That’s why it’s rich white women who come to the attention of the doctors because usually they’re the ones who can afford it. And it’s a tragedy of our society that so many women are suffering, in pain, with no hope of getting any help.
MIC CAVAZZINI: You cite some authors in the book that talk about this trope of hysteria. Barbara Ehrenreich and Dierdre English describe how literature of the time—you know, 19th century—popularised a romantic pathos in female frailty. And they say, “It was acceptable, even fashionable to retire to bed with sick headaches, nerves and a host of other mysterious ailments.” Where does this leave the women who were labelled with those constructs? Presumably they were suffering from real aches and pains.
GABRIELLE JACKSON: I think many of them probably were, yeah, and you would think, right, that if women have been coming with these aches and pains for centuries, someone would have investigated it by now instead of just putting it down to the female condition. That brings me to the other problem that if they go with one problem first, they just go, “Oh, my periods are so painful”, and so then the frontline treatment is usually the pill. And if that helps the doctor will be like, “Great, we’ve achieved something.” But that won’t help the fatigue or the headaches. But there’ll be all these other problems. And it hasn’t helped the back pain or the leg pain. And they’ll think, “Oh, my God, this woman just loves coming to see me.” And it just sounds like that is the definition of hysteria, right.
MIC CAVAZZINI: Yeah, and that’s what I’ve been sort of going round and round in circles over the last week, hopelessly trying to separate all of this social constructivism. So, the chicken or the egg? Which comes first, the stereotype or the symptoms, I suppose?
GABRIELLE JACKSON: I mean yeah, look, hysteria exists as a medical diagnosis because a lot of women came to doctors in pain with all these generalised symptoms that seemed silly, which men didn’t seem to come with. So, there is something happening in women’s bodies, which makes a lot of women sick and in pain. And you can’t live every day in pain and not have it affect your mental health, especially if people don’t believe you’re in pain. You know, there are a fair few studies who show that stress makes the pain worse and the pain makes the depression worse, and I don’t know which came first. I don’t even know if it matters.
But so many women have been told it’s in their head. And that’s why it’s really hard to talk about because all women know that they’re at risk of being dismissed as mad when they go to their doctor and their doctor has a disagreement with them about something. It’s scary. Doctors have so much power. And I think that they just need to recognise that when they’re dealing with these vulnerable patients.
MIC CAVAZZINI: It would take several podcasts to do justice to the social constructions of disease. But if you give me another ten minutes I’m going speculate about why these are so gendered when it comes to pain and anxiety. And how much responsibility Medicine must take for this.
I think of these disease constructions like an onion. At the heart of the onion, yes there often is a precipitating infection or inflammatory disease that contributes to aetiology. But not always. Sometimes there is trauma associated with these conditions.
An often-cited figure is that 20% of women presenting with chronic pelvic pain have a history of sexual abuse. And a meta-analysis of 11 studies found that sexual abuse conferred a 3.5 fold increased risk of chronic pelvic pain. That study was published in 2006 in the BMJ, and a subsequent meta-analysis in JAMA also found greatly increased risk of functional GI disorders, psychogenic seizures and non-specific chronic pain. Women experiences sexual abuse at a rate at least four times higher than men and men who present with post-traumatic stress are more likely to have experienced non-sexual violence.
So it’s clear that the epidemiology of trauma is itself very gendered and so is the way in which this trauma manifests. That’s the second layer of the onion. Women aren’t just more likely to develop chronic pain and anxiety, but also PTSD, obsessive compulsive disorder and, eating disorders. Meanwhile men affected by trauma more typically show externalizing behaviours like drug and alcohol dependence or oppositionality.
I want to make the case that this dichotomy is partly determined by the social roles that are permitted or expected of us, and here is where Medicine does have a profound role. While Medicine is of course subject to social norms, it’s such an established institution that it can also amplify these, and role model other ideals.
Jane Usher from the University of Western Sydney outlines this thesis in a 2013 article titled “Diagnosing difficult women and pathologizing femininity.” Through the DSM diagnostic criteria, the medical establishment decrees what are, as she calls them, “the legitimate symptoms of madness”. These are then disseminated in clinics, medical schools, the media, and self-help articles. And they leave their impression on us, just like constructions of femininity do, plastered as they are on billboards and tv screens.
It’s been argued that the diagnostic criteria of PTSD and borderline personality disorder are feminised by default. Jane Usher describes the evolutionary link between borderline personality disorder and hysteria. “Histrionic personality disorder” was one of the diagnoses in the DSM version three of 1980. Said patient was described as “overly concerned with physical attractiveness... inappropriately sexually seductive… constantly seeks…approval or praise… expresses emotion with inappropriate exaggeration.”
Professor Usher’s response to this checklist? “Isn’t this how we are taught to ‘do girl’ through teenage magazines, romantic fiction, and ‘chick flicks? … Is it surprising that so many women self-diagnose with these disorders and then come forward for professional confirmation of their pathological state?”
Chronic pain might be more firmly rooted in somatic precipitants, but could the expression of it be moulded by social expectation too? You well know that distracting a patient’s attention from a needle affects their sensation of acute pain. Well there’s a paediatrician in the US who suggests that functional pain syndromes have become more prevalent since pain was decreed the fifth vital sign in the 1990s. Now that every health professional and pharma rep asks, “Are you sure it doesn’t hurt just a bit? What would you score it from 1 to 10? What kind of pain exactly”
I’m not saying for a moment that chronic pain isn’t a real and debilitating experience. I hope I’ve made a case instead that along with all of the syndromes we’ve been talking about, it comes down to neural conditioning. This understanding is critical to best-practice therapy across the board. As Pain Medicine specialist Chris Hayes indicated back in episode 51, holistic rehabilitation for chronic pain is about training the body to recover its range of activity without fear of injury. It’s about reducing the sense of threat that keeps a person’s nervous system dialled up, and building social connections to support that. In his best-selling book on recovering from PTSD, psychiatrist Bessel van der Kolk similarly talks about creating “a visceral feeling of safety”. If there’s a take home message from today’s impressionistic overview it’s that this sense of safety can begin in any healthcare setting, and that there should be no hierarchy which sets “medically unexplained” conditions or mental health apart from the rest of Medicine. Here are some final thoughts from Gabrielle Jackson.
GABRIELLE JACKSON: And I don’t think that medicine can fix everything. Definitely not. Medicine can’t stop people beating children. Medicine can’t stop people having car accidents. There are things that happen to women, and that’s not medicine’s fault. I think, undoubtedly, trauma does have long lasting effects on the body as well as the mind. Whose responsibility is it to fix that? I don’t know. Is it Medicine’s? Well, maybe—Medicine seems to have taken responsibility for mental health. So, yes. Not that governments are putting anywhere near the kind of money into it that needs to be done. You know?
MIC CAVAZZINI: A lot of the examples given of unsympathetic treatment in the consultation room, or whatever, could be down to the stigma against mental health itself, perhaps less gender specifically. And even patients themselves, mental health is loaded with so much baggage that some patients even feel that terms like functional disorder is just a euphemism for “psychogenic”. So, I wonder if we can de-stigmatise these functional issues, mental health issues, then would the gendered discrepancies in care fall away? Or does that stigma persist because of its association with femininity?
GABRIELLE JACKSON: That’s a really good question but a really hard question for me to answer. Because it’s so historic. It’s so embedded into the world we live in.
MIC CAVAZZINI: And so cyclical. Where medicine does take responsibility, is how it pathologizes those presentations. And you’ve already alluded to the question of whether the diagnostic label was helpful to you or not. So, for some people it’s great to have something to focus on, to work towards, something that they can fix. Other people find it sort of maybe traps them into this social construction that they can’t get out of.
GABRIELLE JACKSON: Yeah, so that is really interesting. So, for example, I had several doctors tell me that they wouldn’t give a fibromyalgia diagnosis to a patient, not because they didn’t believe them but because they thought other doctors would treat them badly.
MIC CAVAZZINI: Right. And there are similar comments in Kate Young’s interviews with GPs and gynaecologists. Some of them would avoid calling out endometriosis too early, the Big E they called it, because they’re worried about the way it will influence a patient’s outlook. And to quote one gynaecologist, they said, “I think they make it, they can make it the focus of their lives, the reason they can’t go on and do things.”
GABRIELLE JACKSON: See how patronising that is? Like, they think that women can’t be trusted because they love being sick so much they’ll make that their single identity. But if you don’t know what's wrong with you, you can’t do anything about it. Now that I understand my disease, there are so many things that I do that I know make it better. There’s no one doctor who can fix you. And no one with chronic pain is ever going to feel better relying on pills alone. A patient with a chronic pain condition has to play an active role in getting better. And they can’t do that without a diagnosis.
You cannot understand how the self-doubt of thinking you’re a hypochondriac affects your life. It is so debilitating. I did start to ask myself do I like being sick. Like, is there something in my subconscious that just likes being hopeless? You do doubt yourself. And, when you get a diagnosis, it is the biggest relief because it means you’re not mad. And that is really powerful. I always come back to this study I read about fibromyalgia that found that patients who had doctors who they had a good relationship with felt less pain. And just having a doctor who really believes you is lifechanging. Just trusting, making your first port of call to trust what the person in front of you is telling you is something that will be very valuable.
MIC CAVAZZINI: Many thanks to Gabrielle Jackson for contributing to this episode of Pomegranate Health. She’s an associate editor at the Guardian and host of their excellent podcast, FULL STORY. I’m also incredibly grateful to all the people that took the time to provide feedback to me as this episode was being developed. These include members of the RACP, women of other medical colleges, and female colleagues. There are too many to name right here, but I’ve credited them all at our website, racp.edu.au/podcast.
There you can also find links to the great music licenced from Epidemic Sound, and to all the citations mentioned in this podcast. If the story has raised any issues for your own safety or wellbeing, there’s counselling available at the number 1800RESPECT and more supporting information at their website.
In the next episode we touch on some of the funding and structural issues associated with gendered medicine and find that solutions may not be as far away as they seem. Please join me then, and take a moment to share this series with a friend. They can find us on any podcasting app. Pomegranate Health comes to you from the Royal Australasian College of Physicians though the views expressed are my own. I’m Mic Cavazzini, Thanks for listening.