Women’s health concerns are dismissed more, studied less

As an emergency medicine physician since the mid-1990s, I’ve cared for all sorts of patients: old and young, rich and poor, male and female. I’ve also observed the companions who arrive with the patients, as they scramble to handle this health crisis amid work, family, and financial obligations. Often that burden lands chiefly on women, doing double, triple, quadruple duty to care for children, partners, parents, and other loved ones. It’s a global phenomenon: The Organization for Economic Cooperation and Development says the world’s women spend more than 1.1 trillion hours a year on unpaid care of children and the elderly. Men spend about a third as much.

As an executive producer on the television drama Grey’s Anatomy, I write these women into scripts. They are mothers, partners, wives, sisters, daughters, CEOs, and secretaries. The woman who just had a baby, thinks she has a blocked milk duct, and finds out too late that it’s breast cancer.¹ The woman who doesn’t want to admit to being raped because she thinks she’ll be blamed for being where she was or wearing what she wore.

They’re women who have a terminal illness, or need an organ transplant—and have to break it to their daughters. Women confronting their sexuality head-on; getting pregnant at older ages and choosing alternate paths to motherhood, or being childless by choice. Women with brain tumors, mental illness, and depression; women with no insurance, and women who could buy the world.

I write these women because I see these women. Because I am these women. I am firmly stuck in the “sandwich generation,” taking care of an aging mother and three young children. Working full-time. Juggling schools, schedules, extracurricular activities, babysitters, deadlines, caregivers, and professional goals, all while trying to have a semblance of a social life. I am a physician, I am a writer, I am a mother, I am a single woman. I am everywoman, we are multitudes—and we are frequently, quietly, overwhelmed.

If this is the script of so many women’s lives, how do we find the means to nurture health and wellness?

There’s plenty to fault in the medical care, treatment, research, and support that are available to the female half of humanity. But there also are reasons for optimism, in discoveries and advances that show real promise for girls and women. I’m especially hopeful when I see us do the single best thing we can do to promote well-being: Speak up!

More women need to open their mouths and talk. About their miscarriages or their infertility or their contraception scares. About their cancer or their heart disease. About depression. Anxiety. Weight. Eating disorders. Alcohol abuse. Prescription drug abuse. Domestic violence. The stigma attached to such conditions keeps many of us silent. But without loud-and-clear advocacy, the research will not get funded and the policies will not get overhauled. It’s only by finding our voices that we can strengthen each other and grow together into a force for healthy change.

In my role as a writer, obviously I’m a storyteller. I adapt real women’s stories to fashion characters’ stories; they’re the everywomen who appear in my TV show’s plots and in this essay. It’s my belief that good physicians also must be good storytellers. I practice what’s known as narrative medicine, which means essentially this: intently listening to a patient’s story, reading the story the patient’s body tells, and using both to craft a narrative for diagnosis and treatment.

Take the story of Meredith, for example. She’s a surgeon, a widow with three young children, and manages to not only win accolades professionally but also spend time with her children and have a social life. She went to medical school in the early 2000s, when not even half the entering students were women. By 2018, 52 percent of those enrolling were women—progress! More broadly, by 2017, women earned 57 percent of bachelor’s degrees, 59 percent of master’s degrees, and 53 percent of doctorates in the United States, the National Center for Education Statistics reports. That’s truly progress, because the number one element of improving health care is educating women.

Even with Meredith’s advanced degree—and though she introduces herself with the title doctor, wears the white coat, and sports a visible stethoscope—she’s regularly referred to as nurse while going about her hospital business. And if there’s a male medical student in the room when she makes rounds, patients will often tell their story to him instead of her. Stereotypes and bias are a real part of women’s lives, and gender bias is a real problem in medicine.

Another example of that is Miranda—a successful surgeon, having made it through the glass ceiling to become chief of surgery at her hospital. She’s on her second marriage because her first husband couldn’t understand the demands of her job (a common refrain for professional women). She goes into a hospital complaining of the nonspecific symptoms that often signal a heart attack in women²—more subtle symptoms than men’s, such as upper abdominal pain, light-headedness, or unusual fatigue. Miranda is sure she is having a heart attack. (Spoiler alert: She is.) But when women—and especially women of color—raise concerns about their health and demand they be investigated, they are much likelier than men to be brushed aside, not believed, even mocked into silence by health-care professionals. According to author Leslie Jamison, whose writings include the essay “Grand Unified Theory of Female Pain,” women’s pain³ often is “perceived as constructed or exaggerated,” and women’s symptoms may be ignored or treated less aggressively than male patients’ would be.

This dismissive attitude has consequences not only for women’s treatment now but also for the medical research that will produce the cures of the future. Historically in the (male-dominated) medical profession, clinical trials were conducted with male subjects; they were considered the “norm,” and their reactions to a new drug were assumed to be representative of how both sexes would react. Women of reproductive age were excluded “for safety reasons”; so were women in general, to eliminate hormonal differences as a factor in the research. In 1993 the U.S. National Institutes of Health called for women to be included in more trials. In 2016 a medical journal analysis found that clinical trials were including more women, but not always in numbers representative of the female population. It also found that the research didn’t always involve “sex-specific analysis of the safety and efficacy” of a product.

We need women-specific research to help address differences in biology, and discrepancies⁴ in health outcomes, between women and men. Women are more likely to be diagnosed or living with chronic diseases and/or immune diseases; in the United States, 38 percent of women have one or more chronic diseases compared with 30 percent of men. Coronary artery disease causes more severe impairment and more deaths in women than in men (but greater research funding is devoted to studying it in men). New drugs and products come on the market ostensibly for women’s benefit, but some actually harm women.⁵ This suggests a need for more research and testing, with women playing a role as subjects and as decision-makers.

In certain girls and women who turn up at hospital emergency departments, physicians see health problems that probably are treatable. But the social and cultural crises that complicate these patients’ lives often seem to defy resolution.

Jo is so frightened of her past that she has run away from it, changed her name, and disguised her identity. She was a victim of intimate partner violence so severe that she was hospitalized multiple times and feared for her life. Emergency physicians see plenty of domestic violence victims, some with bruises and broken bones, others with unseen scars. But Jo’s not a patient; she’s a physician on the hospital staff. She belies the common misconception that domestic violence occurs mostly in poor, uneducated households. The reality is that on average in the United States, about 20 persons every minute are abused by an intimate partner. And worldwide, domestic violence is the leading cause of injury to women—more than accidents, muggings, or assaults by strangers.

Nadia is a 10-year-old girl who is outside an emergency department, alone and apparently in pain, when a stranger alerts the doctors. An exam shows the girl has a large abdominal tumor and needs emergency surgery. Hospital staff is about to summon child protective services when the “stranger” confesses: She is Nadia’s mother, afraid to show herself because of her undocumented status. This fear of deportation is also why she waited so long to get Nadia examined. Because of the delay, the procedure is much more costly (both physically and financially) than open and preventive medical care would be.

Today’s immigration crises have no simple remedies. But when undocumented U.S. residents lack access to preventive medicine and care, they bring all their care needs to emergency departments—where use by the uninsured costs about $38 billion a year more than non-emergency care would.

Uninsured patients suffer from lack of health-care access, and a woman’s risk of being uninsured increases if she has a low income or is Hispanic/Latina. Women living in rural communities are more likely than women in other areas to struggle with poor health; they have limited access to mammograms and other screenings, and maternity care, because only 6 percent of the nation’s ob-gyns work in rural settings.

Other factors discourage women from accessing the system. Although the Affordable Care Act attempted to lower financial barriers, seeking care still takes money—for childcare, transportation, and out-of-pocket costs. That can be prohibitive for women because they often earn lower wages, have fewer financial assets, and have higher rates of poverty than men. In the United States, a woman also is statistically likelier than a man to be covered by health insurance as a dependent and is thus at greater risk of losing coverage if she then is widowed or divorced or if her policy-holding spouse or partner becomes unemployed. For these reasons and more, about one in four U.S. women has had to delay or forgo health care in the past year because of costs, a Kaiser Women’s Health Survey found.

In the quest for wellness, women contend with one variable that men do not: a reproductive system designed to bear offspring. Whether or not they ever give birth, most women are equipped to do so for some portion of their lives. Depending upon circumstances, that can become a blessing, a burden, a political football, a societal issue. Ultimately, it’s the most personal health issue of all.

Arizona is a pediatric surgeon who loves kids and wants to have her own with her same-sex spouse. Fortunately for them, and for singles and couples who need help to conceive, there are options, including surrogacy, embryo donation, egg donation—and sperm donation, a global industry valued at about four billion dollars. Arizona and her partner decide on sperm donation. She has an IUI (intrauterine insemination) and is elated when her pregnancy test is positive. Unfortunately, on her first ultrasound, there is no heartbeat.

Infertility⁶—not being able to get pregnant or to sustain a pregnancy—affects about 10 percent of U.S. women ages 15 to 44 (some 6.1 million women), according to the Centers for Disease Control and Prevention. But the good news about infertility is that the majority of cases can be treated by conventional therapies such as surgery or medication (and only 3 percent require the use of in vitro fertilization, or IVF). Compared with decades ago, there’s much more hope.

What of the women who don’t want children yet? Or ever? Roughly 60 percent of U.S. women ages 15 to 44 years use a contraceptive method, the Guttmacher Institute reports. And of women in that age range, the abortion rate in 2017 was 13.5 abortions per thousand—the country’s lowest rate ever.

Cristina is a take-no-prisoners kind of person who proclaims herself “childless by choice.” Even when she was married to a man she deeply loved, and he wanted a child, she stayed true to herself (at the price of the marriage). She aligns with the growing wave of women who, for a variety of reasons, are voluntarily child free—a decision as valid as the opposite choice.

Then there are the postponers, those who want to wait to bear children after a career or for other reasons. My advice to them: Look at what the current generation of older, professional women has gone through. Women who wait too long have a much harder time getting pregnant (and it gets very expensive—the average cost of a single IVF treatment is around $12,000). Even with my medical training, I looked at the age-at-conception statistics and somehow thought they didn’t apply to me. Certainly I’d be like the people in the media, or the television characters I write for, who get pregnant at the drop of a hat no matter their age. Guess what? Wrong!

Here’s the truth: A woman’s best reproductive years are in her 20s. Fertility gradually declines in the 30s, as both the quality and quantity of her eggs decrease. Each month that she tries to get pregnant, a healthy, fertile 30-year-old woman has a 20 percent chance of doing so. By age 40, a woman’s chance is less than 5 percent a cycle.

This is why I’m a strong advocate of fertility preservation⁷ via egg or embryo freezing, to avoid “panic parenting” moves such as entering into unwise relationships just to have a child. Izzie, a surgical resident struggling to beat stage 4 melanoma, has her eggs removed to preserve future fertility if she survives her treatments. Others use the technology in less dire circumstances. Yes, egg and embryo freezing are expensive processes, and not a guarantee, but they do offer a choice. Think of them as investments in your future life!

For those who have the desire and have timed everything right, there’s the joy of pregnancy and birth. But even these happy times can be scary. Karen is a quirky woman married to the love of her life, a paramedic who rushes to her bedside when she is in labor. He gets there in time to witness the birth of their baby girl, and it’s a happy day for all until Karen starts feeling some pain that doesn’t seem right. She begins bleeding profusely so is taken to the operating room, where doctors perform a hysterectomy. After the operation, she suffers multiple-organ failure and has a cardiac arrest from which she does not recover. Karen dies of pre-eclampsia, a high blood pressure disorder that can be treated if caught soon enough.

Maternal mortality statistics track what fraction of deaths of women ages 15 to 49 are maternity related. From 2000 to 2017, maternal mortality decreased significantly in the world overall—but increased in the United States. Many elements contribute to such increases; among them are obesity, chronic conditions, socioeconomic factors, access to care, and having children at older ages. Even so, the CDC estimates that about 60 percent of maternal deaths are preventable. And between white women and women of color, the discrepancy is staggering, with black women three to four times as likely to die from pregnancy or childbirth complications.

Our health-care system has done a wonderful job of protecting and improving the outcomes for newborns and preterm babies, but at the expense of ignoring the mothers. In 2018 Congress took a step in the right direction, passing legislation to fund and support states’ efforts to reduce maternal deaths.

Just as they’re integral when new lives enter the world, women are guardians and anchors when long lives reach the end. Women tend to live longer than men (those 85 and older outnumber their male counterparts two to one). Many are doubly exposed to health-care problems because they’re caring for the young and the old in addition to themselves. Ellis is an award-winning, intelligent, driven surgeon in the prime of her career when she is diagnosed with early onset Alzheimer’s dementia.⁸ It ruins her career and eventually leads to the end of her life. Alzheimer’s disease disproportionately affects women, on two levels. Almost two-thirds of adults 65 or older with the disease are women. And of the more than 16 million Americans who provide unpaid care to a person with Alzheimer’s or other dementias, 66 percent are women.

As Americans over 65 become a larger share of the population, that almost certainly will mean more women with Alzheimer’s and fewer younger women to be caregivers. It’s one more reason to take a hard look now at our approaches to health and wellness needs, and make improvements.

In 2015, United Nations member states agreed to try to provide basic health care for every child, man, and woman by 2030. Today, when hundreds of millions of people can’t find or afford health care, we’re a long way from that. But it’s a goal worth fighting for. Each of us can start by advocating for what she personally needs, and what her family and community and country will need, to live lives of health and well-being.

On Grey’s Anatomy a few seasons ago, Meredith Grey—the Meredith I mentioned earlier—barely survives a brutal assault. When she recovers, she offers some powerful advice about the importance of speaking up. I’ll give her the last word here:

“Don’t let fear keep you quiet. You have a voice, so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard.”