In early 2014, Ilene Ruhoy, MD, PhD, was not feeling well. She tired more easily than usual, had frequent headaches, and was sometimes dizzy and nauseous. A hospital-based neurologist, Ruhoy made appointments with several of her colleagues. “Everyone kept telling me that I was working too hard, that I was too stressed out, that I should take some time off,” she recalls.
At first, she was inclined to believe that; after all, she was working a lot. But as the headaches became more persistent, she grew more concerned. She typically got one or two migraines a year, but now she was having headaches weekly. “It wasn’t normal for me and I kept saying that, but they kept sort of dismissing it.” She repeatedly asked for an MRI – doctors aren’t allowed to order one for themselves – but since her neurological exam was normal, her doctors refused.
Then, one day, Ruhoy’s hearing began going in and out while she was grocery shopping, an experience that rattled her enough to make yet another appointment, this time with a primary care doctor who was a friend. “I just cried to her and I said, ‘I really just need you to order an MRI.’”
When Ruhoy emerged from the MRI machine, the technician told her to go directly to the emergency room. She had a 7-centimeter tumor pushing the left side of her brain to the right.
The next day, about a year and a half after she first started complaining of symptoms, she underwent a 7 1/2-hour brain operation. The tumor has grown back twice since then, which she says likely wouldn’t have happened had it been caught earlier.
For Ruhoy, the experience was “a wake-up call” about how frequently women’s symptoms are dismissed in the medical system. “There’s gender bias. That’s for sure,” she says.
This bias contributes to gender disparities in diagnosis and treatment in various clinical contexts. One study of emergency room patients with acute abdominal pain found that the women waited 65 minutes to receive pain medication, compared to 49 minutes for the men. Another concluded that women with knee pain are 22 times less likely to be referred for a knee replacement than men. Women are more likely to be misdiagnosed and sent home from the ER in the middle of a heart attack or a stroke. For a wide range of conditions, from autoimmune diseases to cancers, they experience longer diagnostic delays than men.
In part, the problem is rooted in long-standing gender stereotypes. Viewed as especially prone to “hysterical” symptoms, women are more likely to have their complaints misattributed to psychological disorders or – as in Ruhoy’s case and so many others’ – “stress.” Making matters worse, there’s also a knowledge gap: Until the early 1990s, women were left out of much clinical research, and even today doctors know comparatively less about women’s bodies, symptoms, and common conditions.
The problem is sometimes portrayed as one that can be overcome by women learning to more effectively communicate their symptoms or becoming more empowered to advocate for themselves. But the experiences of female doctors-turned-patients like Ruhoy underscore how insufficient such individualistic solutions are. Ruhoy points out how much she had stacked in her favor: “I’m educated, obviously. I was able to articulate myself. I was never hysterical. I was very clear in my communication with my concerns. And I was speaking to people who knew me. And yet I was dismissed amongst all that.”
For women health care providers, used to having authority in the exam room, it often comes as a shock to find their symptoms minimized or disbelieved by other doctors, even their own colleagues, when they become sick patients. Meanwhile, their dual roles give them a valuable perspective on the biases and structural barriers that leave too many women dismissed and misdiagnosed, as well as the fundamental changes in medicine needed to overcome them.
When Sarah Diekman was a 27-year-old medical student, her health began to unravel. She was often lightheaded, as if she was on the verge of passing out. Brain fog made keeping up with her studies impossible, and she took a leave of absence during her fourth year. Worst of all was the fatigue, which eventually became completely debilitating. “I could hardly get out of bed. I could hardly make a bowl of ramen noodles.”
“I saw at least 30 doctors in 2 years of being extremely sick almost every day,” Diekman recalls. Most said she had anxiety and depression – and perhaps “medical student syndrome,” in which aspiring doctors supposedly become convinced they’re suffering from the diseases they’ve just learned about. Even her gastrointestinal problems were attributed to a psychological problem. Having lost weight because she had excruciating pain and nausea whenever she ate, she made an appointment with a GI specialist. But instead of testing, she was offered a referral to a GI psychologist on the assumption that she had an eating disorder. She recalls thinking, “This is not about my thoughts. I’m afraid to eat because it hurts.”
Desperate for any help she could get, Diekman didn’t challenge her doctors’ conclusions. “I tried every step of the way to just do what they said and be the best patient.” But she also searched for answers on her own. One day she saw a patient in the clinic whose symptoms seemed similar to hers and later looked up more information about the patient’s condition: postural orthostatic tachycardia syndrome (POTS). Convinced it explained her illness too, she flew across the country to see the POTS experts at the Mayo Clinic, who confirmed her self-diagnosis with the autonomic nervous system disorder.
Eighty percent of POTS patients are women and girls, and Diekman’s diagnostic delay is typical of many patients with chronic illnesses that disproportionately affect women, like autoimmune disorders and chronic pain conditions. Marked by invisible symptoms, like pain and fatigue, that are often minimized or labeled as psychosomatic, such conditions have also been under-researched and neglected in medical education, leaving many doctors ill-equipped to diagnose them. “It wasn’t in my textbooks,” Diekman notes. “It’s probably under-recognized because it mostly affects women. And it presents with symptoms that are really stigmatized in women” (Awareness of POTS has been on the rise recently as many long COVID patients have the condition).
For women who also belong to other marginalized groups, additional biases contribute to dismissive treatment. Alicia Miller, a hospital-based doctor who asked to be identified by a pseudonym, thinks her symptoms after a childbirth complication weren’t taken seriously for a trifecta of reasons: “I’m ambiguously brown. I’m overweight. And I’m a woman.”
Research shows patients of color receive inferior care compared to their white counterparts. For example, Black patients are 22 percent less likely than white patients to receive pain medication. Stigma against overweight patients is also pervasive within medicine – and often even consciously held. In one study, more than half of doctors admitted to viewing obese patients as “awkward, unattractive, ugly, and noncompliant.” Miller had long observed the tendency for doctors to blame any and all symptoms on fat patients’ weight. “Overweight women – it’s all their fault. ‘Oh, you’re fat. That’s why you have allergies.’ ‘Oh, you’re fat. That’s why you have pain.’ ‘Oh, you’re fat. That’s why you have diabetes.’”
Still, she had assumed that her authority as a doctor might counteract these biases. “But it didn’t.” In labor with her third child, Miller suddenly felt a severe pain in her left hip; the rest of her body went numb. The epidural had been placed wrong, into her spine. In the weeks following the birth, the hip pain never went away. She sent emails to the doctors on her delivery team, asking if she should get it checked out, but they said to wait and see if it got better in a few weeks. As it got worse, they couldn’t fit her in.
A couple of months after the birth, after passing out from the pain, she went to her hospital’s emergency department. “It felt like my hip had broken.” She’d alerted her doctors she was on her way and had them paged to the ER, but they didn’t come. Without doing a physical exam, the ER doctor ordered an MRI without contrast and told her it didn’t show anything wrong. Her discharge notes said she had “postpartum pain” – which, Miller points out, “is not a diagnosis.”
Once home, a doctor friend from a different hospital came to check on her and found she had no reflexes in her leg. An urgent MRI – with contrast this time – at the friend’s hospital revealed that her nerve was crushed, requiring a spinal surgery.
It’s easy for any patient to wonder if the fault lies with them when dismissed by a health care provider. That’s perhaps especially true when the provider is a trusted peer. “I initially blamed myself that perhaps I wasn’t adamant or stubborn enough when I was telling them my symptoms, or was it something about me?” Ruhoy recalls. Eventually, she “realized it was about them and their hubris” and felt some bitterness towards the colleagues who missed her tumor. “One apologized to me and it meant a great deal. One never said a word. The others checked in on me now and then.” Still, to providers-turned-patients, it’s clear that disparities persist not because most doctors hold consciously prejudiced views, let alone intend to do harm. While it may be about hubris, it’s not often about malice. “I don’t think any of the doctors that dismissed me truly didn’t care about me. I mean, I know they did; most of them are my colleagues, my friends,” Ruhoy says.
In fact, for many providers, the experience of becoming a patient prompts them to rethink some prior experiences with patients of their own. “I think of many patients and often wish I could go back in time with what I know now,” Ruhoy says. She recalls once seeing an 18-year-old woman with multiple diagnoses and a plethora of complaints. “Because this patient was seeing so many specialists and tests that were ordered were normal, she was diagnosed with conversion disorder” – a diagnostic label for unexplained neurological symptoms that was known as “hysterical neurosis” until 1980. “But it is clear to me now that she had a connective tissue disorder that was not diagnosed.”
“I think our system is broken,” Ruhoy says. With ballooning patient caseloads, minutes-long appointment slots, and endless administrative tasks, many doctors don’t have “the time – or even the patience – to really sit and think deeper and look further” when faced with a patient whose symptoms aren’t immediately explained. In a fee-for-service system, bottom-line considerations actually incentivize against doing so. “The system does not financially incentivize making the correct diagnosis or reward the extra time it takes to make a complex diagnosis,” says Diekman, whose experience as a patient inspired her to go to law school after medical school to better understand how policy and legal matters shape medicine.
Add to this culture of overwork a tendency to prioritize objective tests over patients’ subjective reports of their symptoms. Within this system, Ruhoy says, it’s “almost a reflex” to conclude that it’s “stress” when some tests come back normal, one that affects women disproportionately not only because of gender stereotypes but also because women have been understudied relative to men. “So much of our data is based on research on white cis men,” Miller says. (Even pre-clinical research on animals skews male.) As a consequence, from test ranges to symptom profiles, women are less likely to present like a “textbook” case. “So we need to have a larger differential and really listen to what people are saying,” Miller says.
If there are few rewards to getting the diagnosis right, there are also few costs to getting it wrong. In fact, doctors rarely even learn of their diagnostic errors, a fact that experts say allows the problem to remain hidden.
After Miller’s spinal surgery, she spoke to her hospital’s medical director and requested a review of her case. Her doctors got feedback from her and were required to discuss what went wrong. Miller found them defensive and not very open to genuine reflection. Still, that opportunity for learning may not have happened at all if she hadn’t worked there. While her hospital does have a system through which patients can bring cases to review, she was able to bypass the usual process. “If I hadn’t been a physician and spoken to the medical director, I don’t know what would have happened,” she says. In fact, at one point, her neurologist told her that she’d been lucky: “Our average patient would have ended up with permanent neurological damage and nobody would have ever known,” she recalls him saying.
This lack of feedback is “a really huge problem,” says Diekman. Like most patients, she never went back to the 30 doctors who had missed her diagnosis to inform them she’d actually had POTS. “I didn’t have time for that; I was too busy surviving.” Now a second-year resident, she notices how doctors usually assume that if a patient doesn’t return, it’s because they got better – or weren’t that sick to begin with. In reality, the patient may have eventually received an accurate diagnosis from another doctor – or, in the worst-case scenario, abandoned the search entirely. “Patients give up,” Diekman says. “They become hopeless.”
This breeds undeserved overconfidence: “The worse the physician, the more they think they’re right because the patients never came back and they think they’ve cured them.” It also reinforces the stereotype that women often have symptoms that are “all in their heads.” Never learning that she actually had POTS, the doctors who missed Diekman’s diagnosis were never corrected in their impression that she was a depressed, anxious med student, an assumption likely to influence how they view future female patients.
Increasing the diversity of the health care workforce may be one part of the solution. Many women report they’re taken more seriously by female doctors than male ones. And a small amount of research suggests that may be a pattern. For example, one study found that after a heart attack, women had higher rates of death when treated by a male doctor.
But more women working in the profession will not automatically fix these deeply entrenched problems. “Getting women and women of color into leadership positions is necessary but not sufficient,” says Miller. “We’re shifting titles, but we’re not shifting values.” Too often, women and other marginalized doctors are tokenized, with little power to actually change the culture of medicine. And, frequently, the culture changes them. “Physicians are being dominated by powers outside of their control,” says Diekman. “I think most of them start off as medical students caring about patients and taking careful histories and being the doctors that patients want, and the system slowly incentivizes them away from that and eventually their will is broken.”
For many providers, the view from the other side of the doctor-patient relationship can be profoundly transformative, leaving them more empathetic to patients, attuned to the unconscious biases and systemic problems within medicine that undermine their care, and reflective about the kind of doctors they wanted to be.
After her brain surgery, Ruhoy went into private practice so that she could give herself more time to see patients and think about their cases. “I wanted to be better. And I couldn’t be better under those restrictions in the hospital system.” She now understands her relationship with each patient as a partnership, in which they bring different expertise to their shared goal of the patient’s recovery. Above all, she has become a firm believer in patients’ testimony. “I know that they know their body better than I do, and if they think something is not right, I have no reason not to believe them. Even though every test can be normal, if they insist that they’re having the symptom, I believe it. And so I go looking for ways of trying to find out why and ways to try to help them.”
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2024-04-13 11:26:21
