Starr Mirza was a pre-teen when she started having the symptoms: headache, “sparkling vision,” dizziness, and feeling uneasy on her feet. Then came the short blackouts. But no one ever bothered to work her up for it.
Mirza’s parents had been taking her to emergency departments (ED) and doctors. But when they went to one particular doctor, “he looked at me and then looked at my parents and said, ‘Well, clearly what is going on here given her age and her gender, is she’s clearly doing this for attention,'” Mirza said Tuesday at the Society to Improve Diagnosis in Medicine (SIDM) annual meeting. “‘She’s probably anorexic or bulimic and didn’t have enough to eat — probably didn’t have lunch. So that is our issue here. And what you need to do is seek counseling; there’s nothing we can do for her physically.'”
Mirza started to believe him. “I started to think, ‘Okay, maybe this was all in my head;’ maybe these were symptoms that I was creating or somehow physically doing to myself, so I stopped complaining,” she said. Then one day, at age 22, she went into work feeling under the weather, “but I’d had all these symptoms for all of these years and I really didn’t think anything of it. I started to have the sparkling and then I started to feel a little sweaty, and I just felt almost like I was having a panic attack. And the next thing I know, I wake up in the [ED] … and they tell me that I’m in full-blown cardiac arrest and they need to give me an EKG.”
The Real Explanation
Mirza was diagnosed with long QT syndrome. “I look at the chain of events and I think, ‘What if that first doctor would have walked into the room and, instead of directly going to my parents, came over and had a discussion with me, asking me my symptoms, asking me what it was I did at school, what after-school activities did I do, what sports I was involved in — really got a good background [and thought] maybe this could possibly be something other than strictly for attention just because I was female,” said Mirza. “I feel there’s so much to learn and so much to take away.”
Mirza’s story was followed by an SIDM meeting session that included author Maya Dusenbery, who discussed her findings regarding why women don’t always receive healthcare as good as men’s. “Ultimately, I concluded there are two big problems,” said Dusenbery, a rheumatoid arthritis patient and author of the book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.
“First, there’s a lack of knowledge about women’s bodies and symptoms, their responses to treatment, and the conditions that disproportionately impact them,” Dusenbery said. “Second, there’s a lack of trust in women’s self reports of their symptoms. There’s a tendency to minimize or normalize — and especially to psychologize — women’s complaints. And my biggest takeaway from my research is that the knowledge gap and the trust gap are really mutually reinforcing.”
The “Knowledge Gap” Remains
The “knowledge gap” came into the public spotlight in the 1990s, with congressional hearings “to draw attention to the fact that for decades, women had been underrepresented or outright excluded from a lot of clinical research,” Dusenbery said. “At the time, the NIH had a policy urging researchers to include women in their studies, but didn’t seem to be enforcing it, well, at all … Meanwhile, the FDA was explicitly prohibiting women of child-bearing potential from taking part in early-phase drug trials,” fearing they might become pregnant during the trial and cause harm to their fetuses.
Much has changed since then; the FDA dropped its policy, and the 1993 NIH Revitalization act passed by Congress requires that phase III clinical research include women and people of color. “But women are still underrepresented in some clinical areas, and while women are usually included in studies these days, it still hasn’t become totally standard practice for researchers to always design their studies in such a way that they can do a meaningful analysis by gender and to actually include such analyses in their published journal articles,” she added.
And while knowledge has been increasing in the last few decades of differences between men and women in everything from the effectiveness and side effects of treatments to differing symptoms and risk factors for the same disease, “a lot of this emerging knowledge has yet to be fully incorporated into medical education,” said Dusenbery. “The result is that even the best doctors just aren’t equipped with as much knowledge to care for their female patients compared to their male patients.”
Dealing with the “Trust Gap”
Then there’s the “trust gap.” “When I first started hearing stories from women of doctors dismissing or disbelieving their symptoms, I initially figured, ‘Well, this is yet another realm where women’s voices aren’t granted quite the same authority as men’s are,” she said. “But as I dug deeper, I realized that the distrust of women’s self reports of their symptoms has even more specific roots within Western medicine, in the history of this concept of ‘hysteria.'”
That word for decades “was a catch-all diagnostic label for pretty much any unexplained symptoms in women,” Dusenbery continued. “And over the centuries, lots of different theories were put forth for its cause. In ancient Greek medicine, a range of symptoms were blamed on a ‘wandering womb’ that was supposedly roving about the body. In medieval times, women’s mysterious symptoms were often seen as a sign of demonic possession or witchcraft.”
At the end of the 19th century, after Freud came along, there was a major shift in thinking, she said. “Hysteria, which had long been considered a physical disease, came to be seen as a psychological disorder that caused physical symptoms. And ever since then, medicine has had this very convenient notion that any symptoms that aren’t readily explained can be blamed on the patient’s unconscious mind. Of course, the term hysteria is no longer used as an official diagnosis, but the concept has really remained alive and well.”
As a result of the trust gap, “women find too often that their reports aren’t enough, that they aren’t taken seriously until doctors find some corroborating objective evidence for their symptoms,” Dusenbery said. “Studies that show that in the [ED] setting, women tend to wait longer than men for diagnostic testing interventions in pain management. Women’s acute problems just aren’t often treated with quite the same urgency as men’s are. And of course, depending on the condition, these kinds of delays or even minutes can really be a matter of life or death … The challenge for women experiencing an acute emergency is to sort of quickly overcome that initial tendency to underestimate the urgency of the problem, and to prove that they’re really sick.”
How can the situation be changed? “The single most critical change that’s needed to combat diagnostic errors in women is better feedback systems in place to let doctors know when they’ve made an error,” she concluded. “As experts like Dr. Mark Graber [SIDM founder] point out, doctors generally assume they got the diagnosis right unless they hear otherwise. And they usually don’t hear otherwise, unless the patient themselves goes back and tells them that they were wrong.”