Medical Gaslighting
Knowing something about medicine – and being famous – doesn't guarantee you'll get competent health care.
In 2017, one day after having an emergency C-section, Serena Williams suddenly began to feel short of breath. Because she'd previously had pulmonary embolisms (blood clots in the lungs), she assumed she was having another clot. She immediately explained the situation to a nurse, requesting a CT scan and a heparin drip. In spite of her obvious distress (she was gasping for breath), her medical history, and her detailed knowledge of what she needed, the nurse thought that pain medication was making Ms. Williams confused, and vaguely dismissed her concerns. Ms. Williams continued to insist that she had a clot until a doctor came and, unhelpfully, performed an ultrasound on her legs. Eventually the doctor ordered a CT scan. The scan revealed that there were indeed several small clots in her lungs.
Ms. Williams survived a medical crisis because she was persistent, and because someone finally listened. Not all women are so fortunate.
"Medical gaslighting" refers to a health care professional downplaying or dismissing health problems reported by a patient. Women often claim to experience this. They often tell some version of the same, three-chapter story. Chapter 1: The woman brings a health problem to a medical professional (who's often, but not always, male). Chapter 2: The medical professional dismisses the problem as trivial, or psychological, and fails to take appropriate steps for diagnosis and treatment. Chapter 3: The woman continues to suffer, because the problem was not trivial.
Practically speaking, the consequences of medical gaslighting include delays in obtaining an accurate diagnosis, as well inadequate treatment even if the diagnosis is correct. Fear of being gaslit may also deter someone from seeking health care in the first place.
In what ways, and to what extent, are women medically gaslit? In this newsletter, stats will play a major role in addressing these questions. I’ll discuss a variety of examples and include a detailed look at reproductive health. I chose this as my focus because on Tuesday, my granddaughter turned 1, and I wanted to write something in honor of her and her mother. (I suspect mom will get more out of this newsletter than the baby will...)
Do women believe they're gaslit?
Yes.
Accompanying the many anecdotes are studies confirming that many women feel gaslit in medical settings. In a survey aired two weeks ago, for example, 61% of millennial women reported interacting with at least one health care provider who didn't take their concerns seriously. In addition, 67% reported having health concerns they never shared with a doctor owing to a fear of being perceived as "anxious, dramatic, or silly". This illustrates an indirect effect of gaslighting: women may not seek medical attention in the first place because they anticipate this experience.
Are women actually gaslit?
Yes.
Hundreds of peer-reviewed studies and other reports document gender differences in medical care that are unfavorable to women.
To be fair, not all of these studies directly implicate gaslighting. Much as I hate to pick on my favorite news outlet, on March 28 the The New York Times ran a story in which the following was cited as evidence of medical gaslighting:
"Studies have shown that compared with men, women face longer waits to be diagnosed with cancer and heart disease..."
Actually, studies on these two diseases aren't comparable in this regard.
For cancer, studies show that the time between first symptoms and diagnosis is longer for women than for men. In these studies, the first symptoms are described retrospectively (i.e., at time of diagnosis). In other words, the gender difference arises from women waiting longer to approach a health care provider. That delay may or may not be due to a fear of being gaslit.
For heart disease, gaslighting is more clearly a major problem. Numerous studies reveal a lingering misconception among medical professionals that women are "protected" against heart disease. As a result, their early symptoms are often misdiagnosed, and when the correct diagnosis is made, treatment tends to be less aggressive than it is for men. (More on heart disease shortly.)
In what ways are women medically gaslit?
In clinical settings – i.e., interactions between health care providers and women – gaslighting can be seen in both diagnosis and treatment.
1. Diagnosis.
The process of diagnosing heart attacks illustrates how gaslighting stems from medical models based on men. We know now that women may experience unusual symptoms during a heart attack, resulting in misdiagnosis and thus a delay in recognizing the problem. But what makes a symptom "unusual"? In this case, it's a symptom that men rarely experience. Women have been underrepresented in studies on heart problems, and so male symptoms constitute the norm. Thus, a doctor may unintentionally gaslight a woman who reports a mix of usual symptoms (chest pain) and unusual ones (back pain, nausea, etc.) because gender discrimination in research has led to an inadequate understanding of women's experiences.
Similar findings emerge for other kinds of medical crises. For example, one study examined several thousand patients who had been admitted to a hospital for a stroke, after visiting an emergency room in the previous 30 days and being released with a misdiagnosis of some relatively minor problem. The researchers found that women were significantly more likely than men to have been misdiagnosed and sent home.
Many other studies show that women have higher rates of missed diagnoses, misdiagnoses, and/or delays in diagnosis for general categories of diseases (e.g., autoimmune diseases), specific disorders (e.g., adrenal insufficiency), and specific symptoms (e.g., neck pain).
2. Treatment.
I find it interesting that medical treatment I would call "proactive", or "thorough", or "multi-pronged", is routinely referred to by medical professionals as "aggressive". That seems like a very male choice of terms.
In any case, studies have shown that men receive more aggressive treatment than women do for a variety of conditions, ranging from heart disease to autoimmune disorders to traumatic brain injury.
Pain management is particularly important. Pain is a common element across many different types of problems, and the evidence that women are medically gaslit with respect to pain is shockingly clear.
For example, studies show that women receive lower dosages of pain medication (relative to body size) than men do after undergoing identical procedures, a common interpretation being that women's reports of pain are taken less seriously. This in turn may reflect gender differences in how patients communicate with health care providers, as well as the greater likelihood of providers misinterpreting women's pain as psychological.
One study found that after coming to an emergency room with stomach pains, women waited for diagnosis and treatment 33% longer than men, even when their self-reported pain levels (on a scale of 1 to 10) were the same. There are other studies like this. What makes them particularly disturbing is that although the experience of pain is subjective, a number chosen from a 10-point scale is not. If women who describe their pain as an "8" on a 10-point scale have to wait longer for medical attention than men who also choose an "8", then women are being gaslit.
Is medical gaslighting a purely clinical problem?
No.
Disregard for women's health concerns arises in part from gender stereotypes that influence, among other things, the science behind clinical practice.
One stereotype is that women are less susceptible than men to certain kinds of problems. I've mentioned the example of cardiovascular disease. Pain may be another example (although the stereotype that women are "weak" and more prone to complaining seems to be more prevalent here. Either way, the result is a less "aggressive" approach to women's pain management.)
Another stereotype is that women and men are, for the most part, physiologically identical and should therefore receive the same kinds of health care. This is sometimes called "bikini medicine", because the assumption is that, apart from the stuff that bikinis conceal, the rest of a woman's body is essentially the same as that of a man's.
Bikini medicine is an example of clinical practice stemming from biased research – i.e., the studies I mentioned earlier in which most or all participants are male, resulting in male physiology serving as the norm. Thus, the recommended dosages for many medications are the same for all adults, even when the original drug trials focused primarily or exclusively on men.
Dosage recommendations do get adjusted sometimes. For example, in 2013, the FDA halved the recommended dosage of Ambien for women, owing to evidence of adverse effects arising from gender differences in metabolism. But this kind of case is the exception rather than the norm. Medical experts note that adjustments may be needed for other kinds of drugs but that the necessary research is lacking.
I turn now to a closer look at two systemic examples, where medical gaslighting of women represents broader cultural and institutional trends. I'll describe a specific condition (endometriosis) that's under-researched, as well as an adverse event (maternal mortality) that illustrates inadequacies in health care for American mothers.
Systemic issues: Endometriosis
Endometriosis is a disorder in which tissue that ordinarily lines the inside of the uterus begins to grow outside the uterus (e.g., in the ovaries or fallopian tubes). Inside the uterus, this tissue, called the endometrium, thickens and then gets shed during menstruation. Problems arise when it grows outside the uterus, because the endometrium still breaks down, bleeds, and sheds, but it has nowhere to go. This creates a number of physical problems, may lead to infertility, and is often accompanied by pain.
Unfortunately, women have often been told that they're just having a painful period, or, when symptoms occur at other times during their cycle, that the problem is just in their heads, or that they're exaggerating.
Here are some key stats:
1. Endometriosis is a common condition, affecting roughly 1 in 10 women of reproductive age.
2. Diagnostic delays are common. Most studies report delays of 6 to 11.7 years on average between first symptoms and diagnosis. (See Appendix for details.)
3. Endometriosis is under-researched. More research funding is devoted to a variety of diseases that affect a much smaller percentage of the population. (See Appendix for details.)
In short, this serious and often painful medical condition is under-diagnosed and under-researched. If 1 in 10 men experienced that much discomfort below the belt, I suspect there would be more studies!
Systemic issues: Maternal mortality
Some background first before linking this topic to gaslighting.
In the U.S. in recent years, there have been just over 17 maternal deaths for every 100,000 live births. ("Maternal death", or "maternal mortality" is defined as death during pregnancy or within 42 days from the end of the pregnancy.)
Taken out of context, this is an encouraging statistic, because it seems small. You could say that an American mother's chances of giving birth but not living long enough to see the baby's first smiles are less than 1 in 5,000 (and even smaller if the mother is in good health).
In context, this statistic is much less impressive. What "context" might be suitable? Here's one: The U.S. has the highest rate of maternal mortality among all developed countries. For example, it's 10 times higher than the rate for New Zealand, and at least twice as high as the rates for most other developed countries.
That 17-in-100,000 statistic doesn't look quite as impressive now. It's even worse when we disaggregate by demographic categories. The rates of maternal mortality are over twice as high for Black mothers (37.1 out of 100,000) as for white (14.7) and Hispanic (11.8) mothers, and strongly associated with SES.
In sum, maternal mortality in the U.S. can be called "low", but only in the context-independent sense that it's a rare occurrence. Viewed from an international perspective, rates in the U.S. are high, particularly among low SES and/or Black mothers.
Experts have argued that maternal mortality is especially high in the U.S. for at least four reasons.
1. Compared to other developed countries, the U.S. has the second-lowest supply of key maternal care providers – specifically, 15 Ob-Gyns or midwives per 1,000 live births.
2. Ob-Gyns outnumber midwives in the U.S., whereas this pattern is reversed in most other developed countries. (Studies have repeatedly shown that midwife-led care outperforms physician-led care with respect to outcomes such as maternal mortality, maternal well-being, and neonatal well-being.)
3. The U.S. is one of the only developed countries where postpartum visits (when slightly over half of maternal mortality occurs) are not covered by national insurance. Instead, an American mother receives postpartum visits only if she pays out of pocket, has the right insurance plan, or is covered by Medicaid in certain states.
4. Postpartum care in the U.S. is inadequate, because the focus may be on the baby rather than the mother, and because postpartum visits often end around the eighth week after birth, too soon to detect causes of maternal mortality that may emerge later on (cardiomyopathy, mental health issues, etc.).
So far I've pointed out a few of the many shortcomings in reproductive health care for American women, but what does all this have to do with gaslighting?
Scholars have noted that the predominance of Ob-Gyns in the U.S. reflects the traditional view that childbirth and maternal care are best managed by experts (where expertise is equated with possession of a medical degree) rather than by midwives (who were considered well-meaning but not expert enough). Some doctors and medical administrators still hold this view, in spite of evidence that midwives are beneficial, and in spite of the fact that almost all other developed countries provide more midwives per capita (and more maternal care providers overall). This looks to me like a form of gaslighting too. I would call it "systemic gaslighting", because entire systems of maternal care are set up in ways that downplay the medical needs of individual women.
How can women deal with medical gaslighting?
Here are two recommendations I've gleaned from several sources:
1. Be persistent.
Following the lead of Serena Williams, a woman who feels that her medical concerns are being ignored or trivialized can insist that those concerns are taken seriously. This may not be easy. Your persistence may be ignored. You may not wish to be persistent, since, after all, medical professionals do have at least some kinds of knowledge that most patients don't have. You just have to remember that no matter how "expert" a doctor is, they may be completely wrong about you. At minimum, you need to make sure they hear you. Hear you, and take what you say seriously.
2. Be prepared.
This includes keeping track of medical records, reading up on possible causes and cures for what you're experiencing, writing down questions in advance to ask the health care provider, and asking for clarification whenever needed. Doctors sometimes discount what patients of any gender say, because they're overworked and/or have biases related to diagnosis and treatment. So, whatever gaslighting a woman experiences may be exacerbated by her doctor's caseload and pet theories.
Final comment
You probably know that "hysteria" comes from the Greek word for "uterus". The connection is that the ancient Greeks inherited from the Egyptians the belief that certain behavioral disturbances are caused by a woman's uterus detaching itself and wandering throughout her body.
I feel like only a man could come up with a theory like that. Even when I step into the coldest of cold water and exhibit behavioral disturbances (e.g., screaming), no part of my body wanders. Certain parts cringe, as it were. There's definitely some movement. But no wandering.
I like to think there's been progress in women's health since the time of wandering uteri, but we still have a long way to go. The extinction of gaslighting is just one of the many challenges women face in receiving competent, equitable, affordable treatment in our health care system. (For information on advocacy, see here, here, or here, for example.)
Appendix: Endometriosis diagnoses and research funding
(a) I count more than 12 studies, published in reputable journals, reporting mean or median delays in the diagnosis of endometriosis ranging from 6 to 11.7 years. In other words, at the time of diagnosis, women are reporting symptoms they've already experienced, on average, for more than 6 years. Some delays may be inevitable (e.g., a woman might not seek treatment so long as endometriosis-related discomfort resembles routine menstrual discomfort and occurs at the same time). However, studies suggest that most delays are preventable, as they arise from patient-centered causes (embarrassment, tolerance, etc.) as well as physician-centered ones (normalization of patient symptoms, unsuitable diagnostic methods, etc.).
(b) The argument that endometriosis research is underfunded is supported by data provided by the National Institutes of Health (NIH), the largest biomedical research institution in the world, and the largest source of health-related research funding. Between 2008 and 2021, the NIH spent only $176 million on endometriosis research. In contrast, during the same time period, the NIH spent over $240 million on Hodgkin's disease research, over $600 million on smallpox research, and over $2 billion on ulcerative colitis research. What's striking about these figures is that roughly 10% of women are diagnosed with endometriosis at least once in their lifetimes – i.e, about 5% of the population experience this disease – whereas people with Hodgkin's disease, smallpox, or ulcerative colitis, taken together, represent less than 1% of the population. (Worldwide, there haven't been any cases of smallpox since 1980.)
Here's another statistic: Lifetime rates of prostate cancer among men are only slightly higher than rates of endometriosis among women (1 in 8 vs. 1 in 10, respectively). However, from 2008 through 2021, the NIH spent more money on prostate cancer research each year than it spent on endometriosis research across the entire 14-year period combined.
Critics might argue that these are apples-to-oranges comparisons. Studies of a particular disease may receive more funding because breakthroughs are imminent, or because the research may yield broader insights (e.g., with respect to genetics), or for some other reason. I'm not persuaded. I think that inertia is the critical factor – extensively researched topics tend to continue to be extensively researched and funded, because the large volume of studies enables breakthroughs, broader insights, and new research questions, as well as a relatively large number of experts who in turn influence funding priorities. In contrast, under-researched areas are less well-positioned to achieve breakthroughs and insights, etc. At the same time, gender bias is likely to have separately influenced research and funding priorities. Thus, NIH funding for endometriosis research since 2008 has not only been low but consistently low, and may continue to be so unless current advocacy efforts prove successful.