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.”