by Rebecca Baumgartner
For a while now, the slogan “Trust the experts” has been a liberal shibboleth meant to imply endorsement of scientific consensus. Despite agreeing, in principle, with what the phrase is meant to signal, I’ve always been bothered by this slogan. Part of it is that as I get older, I realize more and more clearly that everyone is just winging it – even experts. Nobody really knows what they’re doing, at least not to the degree they want you to think they do. Another part of my cynicism about trusting experts is that I’ve personally been let down by them, as we all have to one degree or another. These experiences start to pile up in the course of life, especially if you’ve been unlucky enough to need the services of experts like doctors on a regular basis.
But alongside this cynicism, I recognize that the opposite stance – “Don’t trust the experts” – isn’t tenable either. We have to trust experts if we want to live as active members of society rather than in a bunker full of canned beans wearing tinfoil hats.
I was finally able to understand my way around this dilemma when I came across “The Trouble with Expertise” in The Philosophers’ Magazine. In it, clinical ethicist Jamie Watson says:
“Medical researchers have exploited people of colour, obstetricians have ignored medical decisions from women in labour, pharmaceutical corporations have conspired to increase addiction, and trans patients are routinely stigmatised or refused care. There are lots of reasons to be sceptical about experts. But it’s important to note that those reasons have nothing to do with expertise. The trouble comes because of the power experts have to put people in compromising positions and to use their positions in ways that harm others.”
This sums up why I find it more helpful to think of trust in terms of the system that an expert operates within rather than in terms of any individual expert. I trust the scientific method and the peer-review process, because while neither is perfect, they have internal rules and norms about finding and correcting errors. An individual expert is only trustworthy to the extent that they live up to the standards imposed on them by their system of expertise.
Using one’s expertise in ways that don’t harm others first requires paying attention to others. It’s about seeing the epistemic value in what the other person is communicating – assuming they are sharing something true about their experience and that it’s worth understanding.
When this doesn’t happen, it doesn’t just feel rude; it feels like an ethical violation. I once saw a male orthopedist who, based on the date of his diploma, was about 10 years younger than me. He asked me where my pain was, and when I used the medically correct term “sacroiliac joint” instead of something less accurate but more in keeping with his expectations of the intelligence of a mere patient, the doctor raised his eyebrows and gave a little smile. “Been using Dr. Google, have we?” he said. He then proceeded to tell me – before doing any kind of examination – that he didn’t think this was where my pain was located at all.
What I wanted to say (aside from expletives) was that I had a very personally significant reason to know the names and locations of my own body parts. My sacroiliac joint was hurting – that grants me about as much right to know what it’s called as it does him. Presumably he was just expecting me to point and grunt. Don’t worry, I thought, I’m not going to get ideas above my station. I’ll only look up the parts that hurt.
My doctor’s sneer about using “Dr. Google” is also disingenuous, because there is no other ready alternative. Our health system considers patient education an afterthought, at best. If we aren’t learning what we need from our medical team, and anything found online will be met with condescending dismissal, where does that leave us? Reading back issues of the JAMA in our spare time?
But perhaps the simplest, most down-to-earth reason I felt angry by the “Dr. Google” dig and the default assumption that I had misidentified the location of my pain was that the doctor had demonstrated a complete lack of ethically applied attention. In what should have been a conversation about pain and remedy, my doctor was first and foremost paying attention to his own professional pride.
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While it’s true that anyone can be ignored, one type of patient is more likely to be ignored than others. Embarrassingly, they’re half of the world’s population.
According to the Katz Institute for Women’s Health, “Female patients are continuously gaslighted about their physical and mental health.” They allude to several of the most commonly recognized disparities in how women are treated by their doctors: Heart disease in women is more likely to be misdiagnosed as anxiety; women with autoimmune disorders are more likely to have their symptoms attributed to depression; ovarian cysts are routinely brushed off as “normal period pain”; women have to wait longer to be seen and wait longer for pain medication than men with the exact same symptoms.
Ob-gyn Dr. Mary Claire Haver describes this as the “gender pain gap,” the fact that “while women experience more chronic pain and more chronic conditions than men, their pain is more likely to be minimized and mistreated.” In her book The New Menopause, Dr. Haver explains that women are more likely to be prescribed sedatives or antidepressants, rather than pain medications, when they report pain. They also get less time with doctors on average than male patients do.
Not only are individual women’s symptoms frequently minimized and dismissed by their doctors, but medical research institutions have failed – and continue to fail – women as a whole. We simply don’t have enough data about women’s health, because men’s bodies are still taken as the default in clinical studies and in medical education.
“It’s just like a man’s body but with boobs, right?” So goes my favorite part of the snarky, one-minute song “Female Body” by Farideh. The song’s refrain is: “What’s happening to your body? We don’t know, because we’ve never really studied the female body.”
In her book Invisible Women, Caroline Criado Perez describes just how spotty the research record is when it comes to medical conditions that primarily affect women. For example, even though premenstrual syndrome (PMS) and period pain (dysmenorrhea) affect 90% of all women, there are around five times as many studies on erectile dysfunction (ED) as there are on PMS, even though only 18% of men have ED. There are also far fewer treatment options for severe PMS and dysmenorrhea than there are for ED.
Perez also describes how very few clinical trials actually include women, and therefore we have much less knowledge about how various medications affect women’s bodies. One report by the U.S. General Accounting Office found that less than half of prescription drugs had been tested to see whether and how their effects differed based on the sex of the patient. And clinical trials are often presented as being equally applicable to men and women, even when there were no female participants in the study. This is not just a matter of equality of representation, but is actually biologically significant because, according to Perez’s reporting, “researchers have found sex differences in every tissue and organ system in the human body.”
Medical schools instill the idea that the male body is the default in their course offerings and in the amount of time devoted to topics that are only or primarily applicable to women’s bodies. For example, in Invisible Women, Perez cites data showing that only 9 out of 95 medical schools in the U.S. include a course that could be described as a women’s health course, and in medical textbooks, male bodies are used three times as often as female bodies to illustrate body parts that aren’t sex-specific.
A physician at the Katz Institute for Women’s Health, Dr. Stacey E. Rosen, describes why it’s dangerous to treat women as simply smaller versions of men:
“There’s this general belief from both physicians and patients that, except for the breasts and reproductive organs, women are pretty much little men—smaller versions of their male counterparts who experience an occasional bout of PMS or a menopausal hot flash. But practicing this type of ‘bikini medicine’ is costing women their health and in some cases their lives.”
She goes on to say that this is because “women present with different symptoms, respond to treatments differently and may even be more vulnerable to certain drug side effects than men.” And the field of medicine is very slow to course-correct. Dr. Rosen mentions the sleeping pill Ambien as just one example of a drug whose dosage was developed for men and was later found to have negative effects in women:
“In 2013, the Food and Drug Administration (FDA) cut the recommended dose of Ambien (zolpidem) in half for women after numerous instances of women exhibiting bizarre behavior like sleepwalking, sleep-eating and even sleep-driving. How is it that it took 20 years after the drug was first approved to figure out women were taking twice the necessary dose? Even after this happened, the FDA declined to review the recommended dosage of other drugs. If women metabolize Ambien differently, do we metabolize statins differently? Antidepressants? These are all crucial questions, and we don’t have the much-needed answers.”
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Menopause in particular is chronically under-studied because it suffers from the double-whammy of only affecting women, and only affecting middle-aged women who no longer offer even the medically interesting possibility of pregnancy to justify their existence.
In his book Blind Spots, physician and public health advocate Dr. Marty Makary reports that only 20% of ob-gyn residents – the very doctors who are supposed to know the most about women’s health – are taught about menopause in their training. Dr. Makary says that his own medical education included only about 15 minutes on menopause, and that it was described in overly broad brushstrokes:
“Menopausal symptoms, we were told – by male professors – were merely mild hot flashes and night sweats, affecting just some women, and lasted about two years. But in fact menopausal symptoms affect 80% of women, can be severe, and last an average of 7.5 years.”
This mistaken impression of menopause as a brief span of time in which women are just mildly uncomfortable trickles out into the culture at large. A Google image search for “menopause” reveals dozens of gray-haired women sweating dramatically, such that you’d be forgiven for thinking that’s all there is to it. It’s interesting to consider whether the popular portrayal of hot flashes as the primary or only symptom of menopause has less to do with the percentage of women who actually experience them, and more to do with the fact that it’s a symptom men can easily understand and one that also sounds fairly minor, even comedic. There’s something funny about an angry middle-aged woman literally and metaphorically losing her cool.
In reality, there are many menopause symptoms, some of which can be severe, including joint pain, migraines, insomnia, painful intercourse, depression, memory issues, heart palpitations, vertigo, heavy periods, lack of bladder control, hair loss, weakening of the bones, and frequent UTIs. In particular, the cognitive and psychological effects of reduced estrogen in the body remain under-studied. But hey, sweaty middle-aged ladies fanning themselves are funny. Let’s focus on that.
Dr. Haver, the ob-gyn mentioned earlier, writes about this disconnect between popular perception and biological reality, which she didn’t fully appreciate until she herself began to go through menopause:
“It took my real-life experience and hundreds of hours of self-driven research…for me to understand that the presentation of endocrinological aging was so much more complex than those five common symptoms [hot flashes, weight gain, mood swings, genitourinary symptoms, and sleep disturbances]. I am an ob-gyn; my specialty is treating patients with ovaries, the two small, oval-shaped glands that produce estrogen, progesterone, and testosterone, the hormones essential to a menstrual cycle, fertility, and pregnancy. And it wasn’t part of my required education to become more knowledgeable on the inevitable diminishing nature of this hormone production, or to understand its link to cardiovascular diseases, neurodegenerative disease, certain types of cancer, and lowered quality of life. I don’t think that’s right.”
I recently had cause to ask my own primary care doctor about menopause, and was told I was too young to even begin thinking about such things. This is despite the fact that perimenopause starts on average between ages 40-44 – and I am 40. When I pushed for clarification and mentioned that statistic, my doctor got briefly thoughtful. “You know,” he said, “we actually don’t know that much about it, to be completely honest. You could be right.”
I’ve never had a doctor say anything remotely that humble before – I don’t think I’ve ever even heard a doctor say the words “I don’t know.” I felt instantly validated by his admission, but simultaneously a bit hung out to dry. Why doesn’t a family practice doctor know more about something that will affect half of his patients? To be clear, I don’t see this as a personal failure on his part; on the contrary, I admire his honesty and attention to what I’d said. But there’s no doubt that if I hadn’t pushed back, he would have just fed me misinformation and moved on.
If men experienced conditions similar in scope and severity to menopause, or PMS, or endometriosis, these conditions would no doubt be as thoroughly researched and have as many treatment options as erectile dysfunction does. When medical education is so removed from the biological reality of what happens in women’s bodies, it’s no wonder doctors don’t pay attention to women: their professors, mentors, and textbooks overwhelmingly told them they didn’t need to.
The upshot of all of this, as Perez says in Invisible Women, is that “We need to train doctors to listen to women, and to recognize that their inability to diagnose a woman may not be because she is lying or being hysterical: the problem may be the gender data gaps in their knowledge.” These gaps in the data represent real people and real suffering. The only ethical response is to start paying attention.
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