Journalist, author, and editor Maya Dusenbery first became interested in why women are so often misdiagnosed about five years ago, right after she learned she had rheumatoid arthritis, a chronic autoimmune disease.
Dusenbery, an executive editor at Feministing and author of “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick,” spoke at the recent Society to Improve Diagnosis in Medicine conference about her research and reporting on the gender gap surrounding medical diagnosis.
She knew she had been lucky to receive a correct diagnosis quickly, but began hearing stories about women who spent years seeking the correct cause of their pain. She began researching why so many women experienced long diagnostic delays for conditions like hers. Of the estimated 50 million people with autoimmune diseases, about 75 percent are female, according to the American Autoimmune and Related Diseases Association. Yet, it’s rarely thought of as a woman’s issue. Instead, Dusenbery told the audience of doctors, nurses, policy experts and patients, when it comes to unexplained, chronic pain, diagnosis is often delayed or complaints are dismissed.
Dusenbery ultimately heard from more than 200 women with similar stories. Her book looks at gender bias in women’s health and disease, and how that bias affects the quality of care that patients receive. Ultimately, she said, she honed in on the two biggest problems hindering women’s medical care: the test gap and the knowledge gap.
“There’s a general lack of knowledge about women’s symptoms, bodies and conditions that disproportionately affect them,” she said. “That’s the legacy of decades of women being underrepresented or excluded from the research.”
Second, there’s a lack of trust in women’s self-reports about what they’re experiencing, and a tendency to dismiss or psychologize complaints. That is part of the broader cultural stereotypes about women, and in particular, the conflict of hysteria, whose explanations ranged from a “wandering womb” to demonic possession to witchcraft. Once Freud entered the picture at the end of the 19th century, hysteria became a catch-all psychological explanation for these unexplained complaints, which manifested as physical symptoms.
These two gaps are mutually reinforcing, Dusenbery said. This paternalistic view still persists today. “It’s not a conscious bias on the part of medical professionals, but an unconscious, implicit bias that affects all of us.”
The knowledge gap
In the 1990s, women’s advocates teamed up with Congress to draw attention to women’s exclusion from clinical research. Even some very large foundational studies only included half of the population. The National Institutes of Health had a policy urging researchers to include women, however, it was loosely implemented, if at all. The FDA also explicitly excluded women of childbearing age from participating in early phase drug trials, in case they accidentally became pregnant. And some researchers argued that women’s varying hormonal states and cycles would complicate their results; it was just easier and cheaper to study men, who were considered a more homogeneous group. “This research excuse for excluding women underscored exactly why it was important to include them; it might actually matter in the results,” Dusenbery said.
The FDA has since dropped their policy. In 1993, Congress passed the NIH Revitalization Act, which requires federally-funded Phase 3 research to include women, and to include enough of them to analyze results by gender. However, Dusenbery said that women still tend to be underrepresented in particular research areas, including heart disease, cancer and HIV/AIDS. “Experts have described it to me as sort of an ‘add women and stir’ approach,” she said.
It’s becoming more and more unjustifiable to exclude women or ignore sex and gender differences since an ever-growing body of research shows more differences in effectiveness and risks of treatments to varying symptomatic presentations and risk factors for the same disease, she told the audience. Enough so that the Institute of Medicine produced a report about it in 2001.
“This knowledge gap is not just about the history of failing to consider men’s and women’s experiences with the same disease or with the same treatment. It’s also about how the research community has neglected many conditions that primarily affect women entirely,” Dusenbery said. That led her to a discussion about the second challenge – the trust gap.
The trust gap
The idea that a woman’s medically inexplicable complaints “were all in her head,” still persists. Female patients are frequently told they’re under stress, or have anxiety, or suffer from depression, or the complaints are a result of hormonal cycles – whether menstrual cramps or peri menopause. Other women find their symptoms attributed to their weight, or to just plain malingering.
Dusenbery related the story of one black woman who was finally diagnosed with lupus after a 10-year ordeal of chronic kidney problems and excruciating joint pain. She was prescribed antidepressants, and accused of being a drug addict. Even now, she has difficulty getting past the ER gatekeepers because the assumption that she’s drug seeking is so automatic. She won’t even go to the ER unless one of her regular doctors calls ahead.
“Women are stereotyped as more emotional and more hypochondriacal, but this overlooks the most immediate reason,” Dusenbery said. “It’s long been taught as a medical fact that women are more prone to psychogenic symptoms.” This dynamic helps explain how individual women are perceived when they enter the medical system and the reflective model that so many conditions which predominately affect women are ignored, poorly researched and under-researched.
According to Dusenbery, the reality is that women do have more medically unexplained symptoms (MUS) than men. Various studies show that MUS exist in up to two-thirds of women in primary care. The trust gap with women is a serious potential problem when it comes to diagnosis, especially during their first encounters with the medical system, before any evaluation or testing has been done. “That’s when it’s most critical that a patient’s account of her own symptoms be believed.”
Yet women are often not taken seriously until health providers start getting external evidence that corroborates their accounts. Even in the emergency department, symptoms such as fatigue, dizziness or nausea are often discounted, and women often wait longer for testing and interventions than men. Dusenbery said one of the most harrowing stories she heard was of a 21-year old college student who went to the ER twice within 14 hours with tremendous abdominal pain; the slightest move was excruciating. She was first told her vitals were fine and that she might be having a panic attack. Initial tests were inconclusive and she was accused of being overdramatic when she said she was still in pain after eating something. Yet the pain was so bad, she couldn’t speak, stand or walk.
After she returned to the ER, the doctors suspected she was inventing her symptoms to get painkillers. She was readmitted but denied pain medication. For hours there was no objective evidence to back up her claim of horrific pain, but Dusenbery said that none of the doctors asked for more information about that pain, which could have helped steer them toward a diagnosis. Instead, they no longer believed her pain was real.
When evidence finally started coming back to support what the young woman had been saying — including a chest X-ray indicating a possible ruptured organ, it was like a switch flipped, Dusenbery said. Almost immediately she was treated with more compassion and received the pain medication she clearly needed.
During exploratory surgery, doctors discovered a hole in her stomach caused by an especially fast-growing ulcer. “I don’t think the unjustifiable error here was failing to more quickly determine the ultimate diagnosis. That’s excusable.” Dusenbery said. “What I don’t think is excusable is that the doctors did not take her report of excruciating pain seriously and eventually decided it must not be real at all because they had no explanation.”
Women should be heard and believed
The challenge for women with acute issues is to overcome a tendency to be stoic so that they’re not labeled “hysterical.” For women with non-acute problems and a longer diagnostic journey, the challenge seems to be to hang on to your credibility as a reliable reporter for as long as it takes for the mystery to be unraveled.
For example, rare diseases in the U.S. affect about 30 million people. It takes an average of seven years before a patient is properly diagnosed. Any sort of misdiagnosis doubles this diagnostic delay. Getting a psychological diagnosis extends it 2.5 to 14 times, depending on the disease. “Once you’ve been labeled an unreliable reporter, it’s almost impossible to get your credibility back,” Dusenbery said. “Anything you do will just reinforce the perception and the circular logic built into psychogenic theories.”
So how can the health system address, or better still, solve these problems? There’s no good systems to let doctors know when they’ve made an error. If a patient needs to see four doctors before getting the correct diagnosis, the other three don’t always know they’re wrong, so their assumptions and biases become self-perpetuating.
“She remains what they saw her as – yet another woman complaining of subjective medically unexplained symptoms.” This in turn, affect the way they perceive the next woman who comes in, according to Dusenbery.
She called on medical schools to better educate physicians about atypical symptoms of conditions like heart disease, or autoimmune diseases, and unrecognized side effects of medications that weren’t well-tested in women. Once those feedback systems are in place, it will help expose and make knowledge gaps more visible. Then perhaps, doctors will start believing women more and look for alternative explanations.