Compared to many other diseases, diagnosing a brain tumour is fairly straightforward. Promptly detecting it comes down to being concerned enough about the early symptoms – which range from fatigue to seizures to personality change – to get an image of the brain. Either the tumour is there, or it isn’t.
But in 2016, the Brain Tumour Charity released a report on the treatment of brain tumour patients in the United Kingdom. It found that almost one in three of them had visited a doctor more than five times before receiving their diagnosis. Nearly a quarter weren’t diagnosed for more than a year.
Women, as well as low-income patients, experienced longer delays. They were more likely than men to see 10 or more months pass between their first visit to a doctor and diagnosis –and to have made more than five visits to a doctor prior to diagnosis.
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One 39-year-old woman quoted in the report recalled: “One of the GPs I saw actually made fun of me, saying ‘what did I think my headaches were, a brain tumour?’ I had to request a referral to neurology. I went back repeated times to be given antidepressants, sleep charts, analgesia, etc. No one took me seriously.”
A growing body of research is exploring how “implicit” bias – unconscious biases that are usually not linked to consciously held prejudiced attitudes – contributes to disparities in medical treatment. “We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” says Linda Blount, president of the Black Women’s Health Imperative. “Their bias absolutely makes its way into the exam room.”
One of the most pervasive implicit biases in the medical system regards gender.
Brain tumours are only one example. A 2015 study revealed a longer lag time from the onset of symptoms to diagnosis in female patients in six out of 11 types of cancer. It isn’t that women wait longer to seek medical attention – the delay occurs after they’ve first visited their GP. A 2013 study concluded that more than twice as many women as men had to make more than three visits to a primary care doctor in the UK before getting referred to a specialist for suspected bladder cancer. So did nearly twice as many with renal cancer.
More than just a frustration for patients, these delays cause unnecessary deaths. Each year, an estimated 40,000 to 80,000 people die due to diagnostic errors in the US alone.
In reporting my book Doing Harm, I heard from dozens of women with a range of conditions who, at some point during their search for a diagnosis, were told that their symptoms were due to anxiety, depression, or that all-purpose catch-all: “stress”.
Everybody was telling me there was nothing wrong with me
Jackie’s experience is typical. She first fell ill at age 16, and for years, she suffered from chronic kidney problems, fevers, fatigue, and terrible menstrual and joint pain. She saw a primary care doctor, a urologist, and a pulmonologist. “Everybody was telling me there was nothing wrong with me,” she says.
With tests revealing nothing amiss, Jackie’s primary care doctor decided that she must be depressed and prescribed antidepressants. They didn’t help at all, but Jackie was “accepting whatever the doctors said”.
The tendency to attribute women’s physical complaints to mental illness has its roots in the history of ‘hysteria’ – that mythical female disorder that, over the centuries, was blamed on a ‘wandering womb’ or sensitive nerves and eventually, post-Freud, came to be seen as a psychological problem. The terms have changed over the last century, but the concept – that the unconscious mind can ‘produce’ physical symptoms – has remained alive and well in medicine.
There is a high risk of misdiagnosis inherent in this concept, whether it’s called hysteria, somatisation, or ‘medically unexplained symptoms’ due to stress.
Back in 1965, British psychiatrist Eliot Slater warned that too often a label of hysteria allowed doctors to believe they’d solved the mystery when, in fact, usually they hadn’t. After following up with 85 patients who’d been diagnosed with ‘hysteria’ at the National Hospital in London throughout the 1950s – including by Slater himself – he discovered that, nine years later, more than 60% had been found to have an organic neurological disease, including brain tumours and epilepsy. A dozen of them had died.
Women have long been considered the typical patients with psychogenic symptoms, so it’s no wonder that they are especially likely to find their symptoms dismissed as “all in their heads”. In a 1986 study, for example, researchers looked at a group of patients with serious organic neurological disorders who’d initially been diagnosed with hysteria. They identified the characteristics that made a patient vulnerable to such a misdiagnosis. One was having a prior diagnosis of a psychiatric disorder. Another was being a woman.
The fact that women have higher rates of mood disorders is, itself, likely one reason that it’s so common for women to get a psychogenic label. In the US, women are about twice as likely to have a diagnosis of depression or an anxiety disorder as men.
Studies suggested that as many as 30-50% of women diagnosed with depression were misdiagnosed
But while women may truly have a higher risk, the difference in prevalence rates may be at least partly a consequence of overdiagnosis in women and underdiagnosis in men. Studies in the 1990s suggested that as many as 30-50% of women diagnosed with depression were misdiagnosed. Furthermore, depression and anxiety are themselves symptoms of other diseases, which often go unrecognised in women. And, of course, the stress of suffering from an undiagnosed – and therefore untreated – disease often takes its mental toll. As one article points out, “Ironically, medical misdiagnoses of physical conditions may induce depressive reactions in female patients.”
Once listed in their chart, a psychological disorder heightens the risk that any other physical symptoms a patient has in the future will be automatically dismissed as psychogenic.
I heard from one woman, a middle-aged Italian immigrant to the US with a history of depression, whose worsening abdominal pain was dismissed as menstrual pain for three years. It wasn’t taken seriously even when she brought up the fact that she had a family history of colon cancer. And it wasn’t taken seriously even when she began having rectal bleeding. When she finally pushed for a colonoscopy, it revealed stage-three colon cancer.
Just a few months longer and it would have been at stage four and incurable.
After a few years, Jackie finally got one correct diagnosis. A friend – a well-off white woman – urged Jackie to go see her doctor in a wealthy suburb. He quickly diagnosed her with endometriosis, and surgery alleviated much of her pelvic pain.
But other problems persisted and eventually worsened. After moving to a new city for graduate school, it took another few years to find another set of doctors who would take her symptoms seriously. “I had a lot of, ‘You’re just hysterical,’ ” she remembers. “One of the more common things, especially in emergency rooms, was ‘You’re just drug seeking.’”
As a woman of colour, Jackie was facing more than gender bias. Implicit biases on the basis of race, class, weight, sexual orientation, and trans status all affect clinical care as well.
There is particularly robust evidence showing that US patients of colour, black patients especially, are undertreated for pain. A 2012 meta-analysis of 20 years of published research found that black patients were 22% less likely than whites to get any pain medication and 29% less likely to be treated with opioids.
White children with appendicitis are almost three times as likely as black children to receive opioids in the emergency room
Experts point to a stereotype – widely held by healthcare providers yet utterly false – that black patients are more likely to abuse prescription painkillers. (In fact, white Americans have the highest rates of prescription drug abuse.) But the disparity extends to children, suggesting it’s not just about the assumption of drug seeking. A 2015 study found that white children with appendicitis were almost three times as likely as black children to receive opioids in the emergency room.
A 2016 study suggested that healthcare providers may underestimate black patients’ pain in part due to a belief that they simply don’t actually feel as much pain. When 200 white medical students and residents were quizzed on a series of claims about biological differences between the races, like “blacks’ skin is thicker than whites,” a full half thought one or more of the false statements were true. And, when they later read case studies of two patients reporting pain, those who had endorsed more false beliefs thought the black patient felt less pain, and undertreated them accordingly.
The biggest danger of having your symptoms dismissed is that once doctors believe they are ‘all in your head’, they stop searching for another explanation
Not being taken seriously enough to be treated is frustrating enough. But the biggest danger of having your symptoms dismissed is that once doctors have settled on the conclusion that they are ‘all in your head’ – or made up in order to get painkillers – they stop searching for another explanation.
Consider the experience of patients with rare diseases, who go more than seven years, on average, before being correctly diagnosed. Along the way, they visit four primary care doctors and four specialists and receive two to three misdiagnoses.
While some delay in diagnosing an uncommon disease may be inevitable, this staggering seven-year gap is not simply because it takes that long for doctors to crack a challenging case. According to a Eurordis survey of 12,000 rare disease patients in Europe, those who were initially misdiagnosed experienced longer diagnostic journeys. And, while being misdiagnosed with the wrong physical disease doubled the time it took to get to the right diagnosis, getting a psychological misdiagnosis extended it even more – by 2.5 up to 14 times, depending on the disease.
Given women’s vulnerability to a psychogenic misdiagnosis, it is perhaps not surprising that they reported significantly longer delays than men.
For example, it took an average of 12 months for men to get diagnosed with Crohn’s disease, an autoimmune disease of the gastrointestinal tract, compared to 20 months for women. Men were diagnosed with Ehlers-Danlos syndrome, a group of genetic disorders that affect the connective tissue, in four years. For women: 16 years.
“Being a woman should have no influence on a physician’s clinical ability to diagnose a disease,” the authors of the report wrote. “It is, therefore, difficult to accept that overall women experience much greater delays in diagnosis than men. The more rapid diagnosis of men illustrates that the capacity to do so exists.”
As for Jackie? Midway through graduate school, she finally caught a break. She had been sick for months with a fever that the doctors, despite soaking her in antibiotics, could not break. “A primary care doctor – a woman of colour – believed me, and she collected all of my medical records and literally took them home with her and started trying to piece them together like it was a puzzle.”
She suspected that Jackie might have lupus. A test confirmed it. Jackie thought her battle to be taken seriously was over. In fact, as a black woman managing a chronic disease that frequently landed her in the ER with excruciating pain, there would many more encounters with dismissive healthcare providers in her future.
But at least, after 10 years of searching, she finally had a diagnosis — and, with it, the assurance that it had never been ‘all in her head’. Something really was wrong with her. And now, it could get better.
This story is part of the Health Gap, a special series about how men and women experience the medical system – and their own health – in starkly different ways.
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This is an adapted excerpt from Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Copyright © 2018 by Maya Dusenbery. Published by HarperOne, an imprint of HarperCollins Publishers.
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