She had a textbook medical condition, but it went undiagnosed for more than a year
How stereotyping diseases hurts patients.
The myth that “younger women don’t get heart disease” points to the danger of what Dr. Katarina Hamberg of Sweden’s Umeå University has called a “knowledge-mediated bias.” While an awareness that men or women have, on average, greater or lesser risks of certain diseases is important and useful up to a point, this awareness can lead to diseases becoming so stereotyped as a “man’s disease” or a “woman’s disease” that doctors are blinded to the individual in front of them—to the extent that the stereotype actually becomes self-fulfilling: knowing a condition is more common in one gender tends to result in its under diagnosis in the other gender.
The history of chronic obstructive pulmonary disease (COPD) illustrates this dynamic well. The fourth most common cause of death in the United States, COPD is closely linked to cigarette smoking. Accordingly, for decades the typical COPD patient was the typical smoker: an older white man. But beginning in the sixties, as tobacco companies began targeting women, the gender gap in smoking rates began to close—and the gap in COPD rates soon followed suit. Between 1980 and 2000, women’s mortality rates from COPD tripled. Since 2000, more women than men have died from COPD each year. In a 2001 study, researchers suggested that COPD was being under-diagnosed in women due to the entrenched stereotype associated with the disease. They asked 192 primary care physicians to consider the case of a middle-aged patient, either a man or a woman, with a chronic cough and a history of smoking. On first pass, 49 percent of the women patients received a COPD diagnosis compared to 64.6 percent of the identical male patients. Once test results pointing to COPD were offered, the gender gap narrowed but still didn’t disappear completely.
As the researchers noted, some would argue that the bias demonstrated in the study wasn’t entirely inappropriate given that “the risk of COPD is truly higher in men than in women given the historically higher tobacco consumption rates in men.” But they point out that this is a circular argument: the accuracy of the epidemiological data that tells us how common diseases are in different groups is dependent on doctors making accurate diagnoses. If COPD was under-diagnosed in women—as the study suggested it was—how would anyone know whether it was still actually more prevalent among men? And even if it was somewhat more common among men, that’s irrelevant to whether an individual woman has it. Yet the image of the male “typical patient” was so strong that the doctors in the study overlooked COPD in female smokers, even though the only reason for men’s historically higher rates of COPD to begin with was their higher rates of smoking. Today, despite now officially having higher rates of COPD than men throughout most of their lifetime, women continue to face delays in getting diagnosed.
“Knowledge-mediated” biases do affect patients of both genders. Studies have suggested that men are under-diagnosed with some conditions that are more common among women, including depression, migraine, fibromyalgia, and breast cancer. Still, this type of bias seems to be especially difficult for women to overcome. After all, when the diagnosis goes against what’s statistically expected, a willingness to listen to the individual patient’s symptoms—to trust that she is a reliable reporter even when the symptoms she reports seem unlikely—becomes even more important to making the correct diagnosis. Many women with other diseases stereotyped as “men’s diseases,” like autism and attention deficit disorder, report that doctors were absolutely resistant to the possibility—even when the women suggested the correct diagnosis themselves.
It took Mae six doctor’s visits and eighteen months to get someone to listen when she described her cluster headaches. Considered one of the single most painful medical conditions, cluster headaches are nicknamed “suicide headaches” for a reason. When Mae’s attacks started, her husband, then a medical student who’d just learned about headache disorders, suggested she keep a spreadsheet of when they happened and her symptoms. The level of pain and the pattern suggested that they might be cluster headaches, which, as the name suggests, tend to strike at the same time every day in episodes of a few weeks or months at a time. Mae also had the watering eye and droopy eyelid on one side that are typical of the disorder; she never had the aura that’s common with migraines.
“But the doctors wouldn’t listen to me,” she says. “They heard the word ‘headache’ and immediately determined I was suffering from hormonal migraines ‘like all women.’” While cluster headaches are certainly rarer than migraines and women are less likely than men to have them, the male– female ratio is not as high as previously thought: in the sixties, it was estimated at 6:1 but is now put closer to 2:1. And even if it were 99:1, there would still be the one, whose only hope of getting the correct diagnosis would be for doctors to notice that her symptoms matched those of cluster headaches. Mae showed her longtime primary care physician her spreadsheets, but it didn’t matter—she was prescribed treatments for migraine. She pushed to get a referral to one neurologist, then another. By this point, she was having multiple headaches per day; the migraine medications clearly weren’t helping at all. “When I talked about the symptoms I was experiencing, two prominent neurologists, one from each major teaching center in our city, used a nearly identical phrase: ‘You couldn’t be experiencing that.’”
To Mae, it seemed clear that the fact that she’d suggested the diagnosis was part of why the doctors wouldn’t even consider it. “The first two neurologists were just like, ‘That’s not what you’re feeling; you need to get off WebMD.’ They were looking for brain cancer before they would take my word that I had these headaches that followed this pattern.” The sheer frustration of not being heard was almost as bad as the pain itself. “It was infuriating to be told I wasn’t capable of even knowing what I felt. It was more infuriating than the headaches.”
Finally, Mae went to yet another neurologist and presented all the same information. “He just sat there listening to me and then said, ‘You’re right—this sounds a lot like cluster headaches.’” He offered an immediate solution that would both determine if they were indeed cluster headaches and, if they were, relieve her unbearable pain: an oxygen tank to breathe from when an attack began. “That was a miracle pill. By finally having somebody—my third neurologist—actually listen to me, I had an immediate treatment that worked.”
Mae had ninety-two untreated headaches while trying to get her diagnosis. She says she doesn’t know what would have happened if she hadn’t had a partner in the medical profession, if she hadn’t lived in a major medical mecca, or if she hadn’t had excellent insurance that gave her the financial ability to keep going to specialist after specialist. “I would probably still not have a diagnosis. And I don’t know how I could’ve lived through five plus years of that. I don’t think I could have.”
Excerpted from Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Copyright © 2018 by Maya Dusenberry. Published by HarperOne, an imprint of HarperCollins Publishers.