Rana Mungin was 30-years old when she died of Covid-19 in March. A black teacher in Brooklyn with asthma and hypertension, she was twice diagnosed with having a panic attack in an ER, despite a fever and shortness of breath.
That reaction and lack of appropriate response by doctors was not a fluke. It happens frequently if you are female, especially if you’re a black woman, as several recent books about women’s health care reveal. That’s not news to women’s healthcare advocates, but perhaps now healthcare providers who may not have considered inherent problems involving diagnosing and treating women will be more enlightened.
Possibly the most important book on this issue is Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery. Adding to the impressive and important literature of women’s health, Dusenbery addresses two of the biggest impediments to women getting good care, the “knowledge gap” and the “trust gap.”
The knowledge gap refers to the fact that many doctors don’t know enough about women’s bodies, their symptoms, or the diseases that affect them disproportionately. The trust gap speaks to the stereotyping of women as unreliable reporters at best, and hysterical at worst. These gaps are apt to occur more often with black women. Dusenbery’s central and necessarily repeated mantra is that women are either not trusted when they report symptoms or they are labeled crazy, malingering, or opioid- addicted.
“This book is not about a few sexist bad apples within the medical profession,” Dusenbery says in her introduction. “It is about how all health care providers, like all of us, have unconscious biases by virtue of living in a culture that holds certain stereotypes about women.”
These biases are revealed over and over again as women share their first-person horror stories of trivialization, misdiagnosis, not being believed and more, whether they suffer chronic pain, autoimmune diseases, reproductive problems, heart attacks or other life-threatening emergencies.
Here’s one example. “I was asking for help. But my doctor said, ‘I don’t think you’re at the point where medication is an option, and it can be addictive. Keep exercising and doing yoga and maybe consider meditating. Try to get more sleep. If your symptoms persist, come back in a few months.”
Here’s another. A black woman I know was found to have multiple cysts in her body. She had gained weight and stopped menstruating. What did the doctor tell her? “You have a demanding job and a young child. I think it’s stress.” That opinion was rendered with no diagnostic workup, no referral to an endocrinologist, no curiosity or concern about what systemic problem might be causing the troubling symptoms.
Dusenbery backs up her conclusions with copious references to research studies, women’s personal stories, and other books in the women’s health canon, as she exposes “bad medicine and lazy science” in compelling and convincing ways.
“Doctors think that men have heart attacks and women have stress” speaks to the frequency with which women are told their symptoms are due to stress, a theme played over and over again in the stories women share. “It’s hard work behaving as a credible patient,” as one woman said, underscoring how often pain is deemed to be “all in your head.”
A chapter in Dusenbery’s book called “This is Not Normal” reveals how often women must insist on having diagnostic workups. “Young women aren’t the only group of patients who frequently find their symptoms dismissed as ‘normal’ by healthcare providers. The tendency to normalize symptoms associated with women’s reproductive functions finds echoes in the way elderly patients, trans patients, and overweight patients are often treated.”
“The Career Women’s Disease” points to the modern version of age-old myths suggesting that motherhood and work are incompatible. One 20th century “expert” on endometriosis notoriously stated that the painful condition was on the rise because of “delayed and infrequent childbearing.” The 19th century version of this myth was that if a woman exercised her brain her uterus would atrophy.
Autoimmune diseases are especially challenging for physicians who receive about five hours of lectures on this difficult topic during their entire medical education. Research has shown that women with these diseases, like with many others, see about five physicians over a period of seven years before receiving a correct diagnosis.
The frustration of not being believed or properly diagnosed is intense. As Dusenbery puts it, “The long, frustrating search for a diagnosis is such a common theme running through the stories of women patients that many feel immense relief to finally get a diagnosis, any diagnosis. Being sick without knowing why is very stressful; being sick and told ‘nothing’s wrong,’ is more stressful still.”
Delayed, downplayed, poorly diagnosed illnesses are not simply a medical issue. In this time of “intersectionality,” it’s important to realize that race, class, age, gender and more come into play. As one analyst put it, “if you’re not wealthy, not white, and not heterosexual, you may be receiving less than optimal care.”
That’s why Rana Mungin’s story is so sad, and why Dusenbery’s message, echoing that of other healthcare advocates, is so important. “Listen to women. Trust us when we say we’re sick. Start there, and you’ll find we have a a lot of knowledge to share.” Books like Doing Harm go a long way in arming women for the task.
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Elayne Clift has been a women’s healthcare educator and advocate for over three decades. She lives in Saxtons River, Vt.