Healthcare Has a Race—and Gender—Problem
Elinor Cleghorn on the Struggle for Black Women to Be Heard
We are taught that medicine is the art of solving our body’s mysteries. And we expect medicine, as a science, to uphold the principles of evidence and impartiality. We want our doctors to listen to us and care for us as people. But we also need their assessments of our pain and fevers, aches and exhaustion, to be free of any prejudice about who we are. We expect, and deserve, fair and ethical treatment regardless of our gender or the color of our skin. But here things get complicated. Medicine carries the burden of its own troubling history. The history of medicine, of illness, is every bit as social and cultural as it is scientific. It is a history of people, of their bodies and their lives, not just of physicians, surgeons, clinicians, and researchers. And medical progress has not marched forward just in laboratories and benches, lectures and textbooks; it has always reflected the realities of the changing world and the meanings of being human.
Gender difference is intimately stitched into the fabric of humanness. At every stage in its long history, medicine has absorbed and enforced socially constructed gender divisions. These divisions have traditionally ascribed power and dominance to men. Historically, women have been subordinated in politics, wealth, and education. Modern scientific medicine, as it has evolved over the centuries as a profession, an institution, and a discipline, has flourished in these exact conditions. Male dominance—and with it the superiority of the male body—was cemented into medicine’s very foundations, laid down in ancient Greece. In the third century BCE, the philosopher Aristotle described the female body as the inverse of the male body, with its genitalia “turn’d outside in.” Women were marked by their anatomical difference from men and medically defined as faulty, defective, deficient. But women also possessed an organ of the highest biological—and social—value: the uterus.
Possession of this organ defined the purpose of women: to bear and raise children. Knowledge about female biology centered on women’s capacity—and duty—to reproduce. Being biologically female defined and constrained what it meant to be a woman. And being a woman was conflated with, and reduced to, the “female sex.” Medicine validated these social determinants by constructing the myth that a woman was her biology; that she was ruled by it, governed by it, at the mercy of it. Women’s illnesses and diseases were consistently related back to the “secrets” and “curiosities” of her reproductive organs. The mystical uterus influenced every conceivable disorder and dysfunction of her body and mind. And ever since, medical knowledge about women’s susceptibility to illness and disease has been shaped and distorted by prejudiced beliefs that possessing a uterus defines our inferior position in the man-made world.
Of course, not all women have uteruses, and not all people who have uteruses, or who menstruate, are women. But medicine, historically, has insisted on conflating biological sex with gender identity. Over centuries, medical knowledge about the organs and systems marked “female” have been imbued with patriarchal notions of womanhood and femininity. As medicine’s understanding of female biology has expanded and evolved, it has constantly reflected and validated dominant social and cultural expectations about who women are; what they should think, feel, and desire; and—above all else—what they can do with their own bodies. We understand, today, that our biology does not determine our gender identity. For centuries, feminism has fought for the rights of all people to not have their lives limited by their basic biology. But medicine has inherited a gender problem. Medical myths about gender roles and behaviors, constructed as facts before medicine became an evidence-based science, have resonated perniciously. And these myths about female bodies and illnesses have enormous cultural sticking power. Today, gender myths are ingrained as biases that negatively impact the care, treatment, and diagnosis of all people who identify as women.
Health-care providers and the health-care system are failing women in their responses to and treatment of women’s pain, especially chronic pain. Biased gender expectations directly affect how real, serious, and deserving of treatment women’s pain is perceived to be. Women are more likely to be offered minor tranquilizers and antidepressants than analgesic pain medication. Women are less likely to be referred for further diagnostic investigations than men are. And women’s pain is much more likely to be seen as having an emotional or psychological cause, rather than a bodily or biological one. Women are the predominant sufferers of chronic diseases that begin with pain. But before our pain is taken seriously as a symptom of a possible disease, it first has to be validated—and believed—by a medical professional. And this pervasive aura of distrust around women’s accounts of their pain has been enfolded into medical attitudes over centuries. The historical— and hysterical— idea that women’s excessive emotions have profound influences on their bodies, and vice versa, is impressed like a photographic negative beneath today’s image of the attention-seeking, hypochondriac female patient. Prevailing social stereotypes about the way women experience, express, and tolerate pain are not modern phenomena—they have been ingrained across medicine’s history. Our contemporary biomedical knowledge is stained with the residue of old stories, fallacies, assumptions, and myths.
Over the past few years, gender bias in medical knowledge, research, and practice has hit the mainstream. Headlines like “Why Won’t Doctors Believe Women?,” “Doctors Are Failing Women with Chronic Illness,” and “Doctors Are More Likely to Misdiagnose Women Than Men” crop up regularly in the UK and US press. Public awareness is growing around the way that women are all too frequently being dismissed and misdiagnosed. We’re learning that medical sexism is rife, systemic, and making women sicker. But women are not a monolithic category. The extent to which gender bias affects a woman’s health—and life—depends on who she is. I have a chronic disease. But I am acutely aware of my privilege. I am white and cisgender, and I look healthy enough to pass as “well.” I also have access to publicly funded, universal medical care through the UK’s National Health Service. The discrimination women encounter as medical patients is magnified when they are Black, Asian, Indigenous, Latinx, or ethnically diverse; when their access to health services is restricted; and when they don’t identify with the gender norms medicine ascribes to biological womanhood.
In the US, Black, Asian, and other ethnically diverse women face serious barriers to accessing adequate health care, treatment, and services, as well as being approved for medical insurance. Structural intertwines insidiously with gender bias: 22 percent of Black women in the United States have experienced discrimination when they visited a doctor or a clinic. As a white woman, I risk having my pain written off as hysterical. But a Black woman will often have to fight to have the very existence of her pain acknowledged. A study in 2016 showed that myths about biological racial differences lead to massive disparities in the medical treatment of Black people’s pain. The false but pervasive belief that Black women feel less pain, because they are assumed to have “thicker skin” and “less sensitive nerve endings,” originates from dehumanizing falsehoods perpetuated to justify white history’s horrific abuses of enslaved Black people. This racist discounting of Black women’s physical and psychological pain means they are prescribed fewer pain medications and are more vulnerable to misdiagnosis or to having their diagnoses dangerously delayed. And these disparities are killing them.Racist discounting of Black women’s physical and psychological pain means they are prescribed fewer pain medications and are more vulnerable to misdiagnosis. These disparities are killing them.
In the UK, Black women are five times more likely to die from complications in pregnancy and during childbirth than white women. In the US, Black women have the highest rates of maternal and infant mortality of any country in the industrialized world. And many of the pregnancy and birth complications killing Black women are preventable. Preeclampsia, a hypertensive condition that can occur suddenly during pregnancy, strikes Black women at 50 percent higher rates than white women in the UK and 60 percent higher than white woman in the US. The risk of developing the condition escalates in women with other chronic diseases, including lupus, diabetes, and kidney disease, which Black women in the UK and US experience at significantly higher rates.
If preeclampsia is ignored or untreated, it can lead to eclampsia, which causes potentially fatal seizures, cardiac disease, kidney and liver damage, blood clots (including pulmonary edema, which affects the lungs), fetal growth disorders, and infant and maternal death. The early warning signs of preeclampsia—such as raised blood pressure, headaches, nausea and vomiting, vision disturbances, heartburn, and swelling in the feet, ankles, face, and hands—can easily be mistaken for normal pregnancy symptoms. Black women are not treated with enough respect, attention, and empathy when they report their pain. Their testimonies about what is happening to them—to their own bodies—are invalidated all too often. It’s a risk for Black women to tell the truth about their pain. It’s not enough for medicine to address the racist biases contributing to this shocking lack of care and empathy. Medicine needs to become actively antiracist, which means facing its complicity in the historic neglect of Black, Asian, and other ethnically diverse women.
The invisibility Black women feel and encounter when they are unwell isn’t contained to the emergency room, the clinic, or the doctor’s office. Ignorance and mistreatment arise from the implicit—and sometimes explicit—biases held by some medical professionals, but it’s never only social. It is deeply historical and systemic, and it pervades knowledge and research as perniciously as it impedes care and treatment. I do not believe the vast majority of doctors are consciously dismissing women out of hand. I truly hope that most medical professionals are not willfully nullifying and obstructing the health concerns of Black women because they are explicitly racist. But the persisting discrimination against unwell women is cast by a centuries-long shadow, which skews perspective and judgment beyond the level of unconscious and individual prejudice. Women’s diseases—particularly those that occur differently and more frequently in Black women and other ethnically diverse women— were not historically a priority. As a result, there is a profound gender and race gap in medical and clinical knowledge. From the exemption of women from swathes of clinical and observational trials and studies until as late as the 1990s to the failure to examine how heart disease, certain cancers, and HIV and AIDS manifest differently in female bodies, decades of medical advancements have failed to take women into account. And as rates of diagnostically challenging, incurable diseases rise in women across the world, this culture of neglect urgently needs to be corrected.
Sometimes women’s bodies genuinely baffle medicine. Pain and fatigue are the most common “medically unexplained” symptoms. And these symptoms are endured every day by women with mysterious chronic diseases whose very existences are often contested within the medical community. Chronic fatigue syndrome and fibromyalgia both affect more women than men, but not nearly enough research dedicated to finding out why. In no small way, the understanding of these complex, diagnostically challenging illnesses has been mired by medical misconceptions and social attitudes toward women’s expressions of their physical feelings. Faced with a patient whose illness baffles them, a doctor might consider that the cause is psychological. Since the 1950s, psychosomatic diagnoses have validated the very real ways that the mind can express itself through the body. But those recognized classifications have become entangled with misconceptions about women’s tendencies to exaggerate and feign their symptoms. And this dismissal rears its head acutely when it comes to “female complaints” such as gynecological diseases and disorders, which have long been shrouded in shame, secrecy, and mythology.
Endometriosis, a chronic, incurable disease in which endometrial tissue grows and spreads in other places in the body, is an object lesson in male-dominated medicine’s historic failures. This disease was named in the 1920s but has existed in medical literature for centuries. Across those centuries, so many punitive fictions and fantasies have been projected onto women’s blood and pain. Its symptoms—including excruciating pelvic, back, and stomach pain; pain during sex; and heavy bleeding— have an extremely long history of being pathologized as physical expressions of emotional distress. In the nineteenth century, women’s pelvic and abdominal pain, as well as their menstrual “derangements,” was met with aggressive and butchering surgeries, accusations of hysteria, and forced admissions to asylums. Today, women are frequently dismissed as neurotic, anxious, depressed, hypochondriac, and even hysterical when they report the early symptoms of endo. Menstrual and gynecological pain, for too long, has been minimized as the “natural” and inevitable consequence of being female.
Today, endometriosis affects an estimated one in ten women across the world. It takes an average of between six and ten years to be correctly diagnosed. Not nearly enough research or time has been spent figuring out the cause of this debilitating disease, which has led to a woeful lack of care and respect for sufferers. And one of the most prevalent mythologies about who gets endo still has a malign effect. Since the late 1940s, medicine has cultivated an image of the endo sufferer a white, middle-class, overeducated, and socially and privileged young woman who resisted the biological having children. It was not even recognized as affecting women until the 1970s, when it was frequently misdiagnosed inflammatory disease—a bacterial infection that can be sexually transmitted. Racist views of Black women’s sexuality and pain sensitivity have also obstructed an understanding of other gynecological diseases that affect them more frequently and in different ways, including uterine fibroids, cervical cancer, and polycystic ovarian syndrome. It wasn’t until 2012 that a team of research gynecologists studying endometriosis in Detroit, Michigan, revealed that Black women often have more severe growth of endometrial tissue at different places in their bodies than white women do.
From Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn with permission from Dutton, an imprint of the Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2021 by Elinor Cleghorn.