A recent study suggests younger women who have heart attacks may hesitate to get help because they’re afraid of being labeled hypochondriacs. But the bigger problem is just how justified that fear really is.

Heart disease is the number one killer of both men and women in the United States, yet it’s long been considered a “man’s disease” in the popular imagination. This perception likely stems, in part, from the fact that coronary heart disease, the most common cause of heart attacks, is more prevalent among men—and tends to strike them at a younger age. When younger women do have heart attacks, though, studies have found that they are about twice as likely to die as their male counterparts—and more than 15,000 women under the age of 55 do every year.

For decades, studies have attempted to tease out the various factors that may contribute to that significant gender gap. Recently, researchers at the Yale School of Public Health published a qualitative study exploring the experiences of women under the age of 55 who had been hospitalized for a heart attack. The main take-away—according to most headlines summing up the results—seems to be that younger women may “ignore” or “dismiss” their symptoms and “hesitate” or “delay” in seeking care, in part out of anxiety about raising a false alarm.

But focusing on what individual women do—or don’t do—when they’re having a heart attack is a way of subtly shifting the blame for the deep and systemic failures of our health care system onto its victims. In reality, the themes that emerged from the interviews with 30 women in the Yale study, as well as previous research on women and heart attacks, paint a more complicated—and even more disturbing—picture of how gender bias plays out on multiple levels, both within and outside the medical system, to affect women’s ability to get life-saving care in a crisis.

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Over the past couple of decades, public education campaigns have gradually increased awareness that heart disease is a major health threat among women. But many of the interviewees in the Yale study, even those who had a family history of the disease, underestimated how much they were personally at risk, often figuring that they were too young to be having a heart attack. They also had a fairly stereotypical idea, gleaned mostly from popular media, of what it would feel like: the sudden onset of chest pain and shooting left arm pain that marks the “Hollywood heart attack.” So when they began to experience symptoms like jaw pain, upper back pain, a feeling of indigestion, nausea, and fatigue—the “atypical” signs that women are more likely than men to get—they tended to attribute them to other health problems.

To an alarming degree, their misconceptions simply mirror the ignorance about women’s heart disease in the medical community. Although more women than men have died each year from cardiovascular-related causes since 1984, fewer than one in five doctors—primary care physicians, OB/GYNs, and even cardiologists—surveyed in a 2005 study knew that. And they tended to underestimate female patients’ personal risk for the disease, recommending fewer preventative measures to them compared to the men. Health care providers also seem to be on a rather steep learning curve when it comes to understanding how women’s experiences may diverge from the “textbook” heart attack. In 1996, a national survey revealed that two thirds of doctors were completely unaware of any gender variations in symptoms. Last year, a poll of physicians commissioned by the Women’s Heart Alliance found that only about half agreed that there were differences between men’s and women’s hearts.

Of course, the fact that women’s heart attacks are less likely to adhere to the “textbook” model is not exactly an accident, since the textbook was, quite literally, written based on what men’s heart attacks look like. Though there’s been slight improvement since the National Institutes of Health Revitalization Act mandated proportional representation of women and minorities in clinical trials in 1993, recommendations for preventing, diagnosing, and treating heart disease continue to be largely extrapolated from research conducted on white, middle-age men. A review of the American Heart Association’s 2007 prevention guidelines for women, for example, found that they drew on studies in which women made up only 30 percent of the subject population. Only one third of the studies even broke down the results by gender.

What modest progress has been made in closing this gender gap in the clinical studies has led to some real shifts in practice—and probably contributed to the decline in cardiovascular-related mortality rates, especially pronounced among women, since 2000. Last year, the American Heart Association credited recent gender-specific research with improving the diagnostic processes for non-obstructive coronary heart disease in women. “For decades, doctors used the male model of coronary heart disease testing to identify the disease in women, automatically focusing on the detection of obstructive coronary artery disease,” AHA cardiologist Jennifer H. Mieres explained at the time. “As a result, symptomatic women who did not have classic obstructive coronary disease were not diagnosed with ischemic heart disease, and did not receive appropriate treatment, thereby increasing their risk for heart attack.”

In all likelihood it’s mostly thanks to these improvements in catching and managing coronary heart disease before it causes a heart attack that the mortality gap between younger women and men has begun to narrow in recent years. It’s less clear if health care providers have become any better at recognizing—and quickly responding to—heart attacks in women when it does get to that point. Like their patients, doctors remain slower to act when symptoms don’t conform to the “classic” model. A 2012 study that tracked more than 1.1 million heart attack patients from 1994 to 2006 concluded that this helped explain why 15 percent of the women died in the hospital, compared to 10 percent of the men. Patients who never experienced chest pain were nearly twice as likely to die, due in part to delays in getting life-saving interventions. And women, particularly younger women, were overrepresented in this group: 42 percent of the women didn’t have chest pain, compared to only 31 percent of the men.

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But attributing the disparity entirely to a difference in symptoms may actually understate the gender bias at play. Among younger patients in the 2012 study above, gender played a role independent of symptoms, chest pain or not. In the Yale study, too, while the interviewees had a range of symptoms, including atypical ones, the vast majority of them—93 percent—did indeed have chest pain. And they told stories of unresponsive health care providers and delays in getting timely work-ups when experiencing both atypical and typical symptoms. One woman, for example, called her doctor to report chest pain and was told to schedule a regular appointment—five days later.

A series of studies led by psychologist Gabrielle R. Chiaramonte in 2008 provides some clues as to why that may be. In the first study, 230 family doctors and internists were asked to evaluate two hypothetical patients: a 47-year-old man and a 56-year-old woman with identical risk factors and the “textbook” symptoms—including chest pain, shortness of breath, and irregular heart beat—of a heart attack. Half of the vignettes included a note that the patient had recently experienced a stressful life event and appeared to be anxious. In the vignettes without that single line, there was no difference between the doctors’ recommendations to the woman and man. Despite the popular conception of the quintessential heart attack patient as male, they seemed perfectly capable of making the right call in the female patient too.

But when stress was added as a symptom, an enormous gender gap suddenly appeared. Only 15 percent of the doctors diagnosed heart disease in the woman, compared to 56 percent for the man, and only 30 percent referred the woman to a cardiologist, compared to 62 percent for the man. Finally, only 13 percent suggested cardiac medication for the woman, compared to 47 percent for the man. The presence of stress, the researchers explained, sparked a “meaning shift” in which women’s physical symptoms were reinterpreted as psychological, while “men's symptoms were perceived as organic whether or not stressors were present.”

That was when the patients did experience the “classic” heart attack symptoms. In the next twist on the study, the researchers asked 142 family physicians to assess a male and female patient presenting with atypical symptoms, including nausea and back pain. This muddied the picture further: The woman was slightly less likely than the man to receive a heart disease diagnosis, but neither was likely to get one at all. And when stress was added to the mix, both men and women became even more likely to be diagnosed with a gastrointestinal problem instead. Given that women more commonly have both atypical symptoms and signs of anxiety, the end result is, yet again, that women are left under-diagnosed.

In Chiaramonte’s studies, the hypothetical patients had the exact same risk of a heart attack according to their age group. Given that younger women are, on average, at lower risk for heart attacks than younger men, the tendency to dismiss their symptoms as anxiety is likely even greater.

That’s what a 2014 study looking at over 1,000 patients, aged 18 to 55, who had heart attacks in Canada, the United States, and Switzerland, suggests. The study found that men received faster access to cardiac testing and care than women; the average time it took for men to get an electrocardiogram, for example, was 15 minutes, compared to 21 minutes for women. While some factors—including an absence of chest pain—seemed to cause delays in both genders, anxiety was associated with the failure to meet the 10-minute benchmark for ECG only in treating female patients. The researchers also gave the patients a personality test gauging how closely they adhered to traditional gender roles and found that both men and women with more stereotypically feminine traits faced more delays than patients with masculine traits.

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Feminist critiques of modern medicine have long noted that, particularly when the cause of an ailment is unknown, doctors default to a psychological explanation in women more than in men. There are certainly some factors that may heighten this tendency when it comes to heart attacks. After all, only 20 percent of people who come to the ER with chest pain are actually having a heart attack. There is also clear symptom overlap between a heart attack and an anxiety attack, and younger women are at relatively lower risk for the former and higher risk for the latter. This reality, the Yale researchers suggest, might contribute to “initial triage strategies to attribute symptoms to non-cardiac conditions” in young women. One cardiologist put it more bluntly: "In training, we were taught to be on the lookout for hysterical females who come to the emergency room.”

But to a large degree, that sentiment reflects the kind of treatment many women receive from the health care system as a whole. The fact that psychological problems, like anxiety disorders and depression, can have a wide range of “non-specific” symptoms means they can serve as remarkably plastic diagnoses. To take just a few examples from the experiences of young women I know: For a month, multiple health care providers insisted that a friend’s stabbing chest pain was likely just anxiety before they realized it was pericarditis, an inflammation of the lining around the heart that causes symptoms similar to a heart attack. Dizziness, wooziness, ringing in your ears, and floaters in your eyes? An infectious disease specialist suggested that another friend see a therapist for depression, when she was actually suffering from West Nile virus. Others have encountered physicians eager to play armchair psychologists and explain away the fatigue and widespread pain of fibromyalgia, and the abdominal pain and incontinence of a ureaplasma infection.

This pervasive bias may simply be easier to see in the especially high-stakes context of a heart attack, in which the true cause usually becomes crystal clear—too often tragically—in a matter of hours or days. When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify, as many women either accept misdiagnoses or persist until they find a health care provider who believes their symptoms aren’t just in their head. But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. In the fact that women make up the majority of the 100 million Americans suffering from (often under-treated) chronic pain. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness. Then there are the diseases, like chronic fatigue syndrome and fibromyalgia, that exist so squarely at the overlap of the Venn diagrams of “affects mostly women” and “unknown etiology” that they’ve only recently begun to be recognized as “real” diseases at all.

And it can be seen, too, in the women who simply disengage from the system altogether. In the Yale study, interviewees reported “limited and sporadic connections” with primary care for routine check-ups and preventive heart care. In part, this was due to structural barriers—such as lack of insurance and little time between work and family responsibilities—that other research has found tend to disproportionately affect women. But some interviewees also explained that they were concerned about being “perceived as complaining about minor concerns” and had had negative experiences with health care providers in the past: “poor physician-patient relationships, feeling rebuffed or treated with disrespect, and being denied care.” It’s hardly surprising that many also reported being hesitant to seek help when they suspected they might be having a heart attack for fear of being perceived as hypochondriacal.

This fear didn’t fall out of the sky. And while it can’t be blamed solely on the health care system, it also can’t be separated from the medical establishment’s systemic failures to study, understand, and take seriously women’s health concerns.

Fixing these bigger problems—lack of access to preventive care, the gender bias in medical research and education, the psychologization of women’s ailments—is hard. It’s much easier to conclude that “we” just need to “empower” women to recognize their symptoms and seek help without fear of judgment. But that’s just a way of saying that individual women need to compensate for the health care system’s biases: that they should know their risk of heart disease better than their doctors do, should be able to identify the symptoms of a heart attack more readily than their doctors can, and should demand care—and be prepared to fight for it—in spite of their doctors’ tendency to dismiss them.

Call me crazy—hysterical, even—but I don’t think you should have to feel that empowered just to receive proper medical treatment.

 

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