When Doctors Don’t Believe Women’s Pain

Tammy Burgardt rarely stopped. Her weekdays started at 3 a.m. She had the early shift at a Costco near Edmonton, where she manually stocked pallets for wholesale products. It was labour-intensive, and by the end of her shift, she easily hit 10,000 steps. At 9 a.m., the now 49-year-old would drive back home to homeschool her two youngest children. In the afternoon, she would take them on a field trip or they’d finish their homework while she made dinner and cleaned up around the house. In the evening, she’d drive one kid to dance and the other to hockey. Bedtime was 11 p.m., and she’d wake up the next day to do it all over again.

When the pandemic was declared in March 2020, everyone stopped. Burgardt stopped in a different way: She had COVID-19. Or at least that’s what she thought. Like other COVID long haulers, she never tested positive for the virus but had all its hallmark symptoms: fever, chills, shortness of breath, chest pain and chronic fatigue. Her doctor told her to wait it out.

As weeks grew into each other, Burgardt wasn’t getting any better. Her once-hectic work days slowed to a stop as she realized she couldn’t physically go back to work. She couldn’t take ten steps between the bed and her couch without collapsing from exhaustion. She drank six cups of David’s Tea a day to soothe her sore throat. She couldn’t take a full breath anymore—it felt like there was something heavy rattling inside her chest.

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Her family doctor blamed her childhood asthma and prescribed her an inhaler. When she complained the puffer wasn’t helping, he insisted she needed to be patient. Give it time, he kept saying. A few months later, he said she was just anxious. Burgardt was the sole caregiver to her elderly parents during the pandemic—of course, she worried about getting them sick. But anxiety didn’t explain her cough, sore throat, headache or constant trouble breathing.

Frustrated with her doctor, Burgardt began looking for other treatments at the end of 2020. She reached out to a woman on Facebook who was part of the Edmonton Primary Care Network and had information about an Alberta Covid Clinic. Research on COVID long haulers was just emerging, but Burgardt suspected she was one of them. A doctor from the Primary Care Network put her in touch with other Alberta specialists, one of whom was a psychologist. Over four long sessions, the psychologist told Burgardt she wasn’t actually sick—it was all in her head. The only way she would get better was to stop convincing herself that she was sick. Not wanting to worry her kids, Burgadt kept thoughts of symptoms inside. Her body betrayed her—could she still trust it? If she had the energy to burst into tears, Burgardt tells me, she would.

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Three years later, she’s grieving the life she once had. It feels like she’s aged decades—a 20-minute walk around her neighbourhood puts her in bed for three days. She forgets words and it takes longer to form thoughts. She’s always exhausted. She can’t attend her kid’s hockey games anymore because the arena he plays at has a couple of stairs. She wakes up every day exhausted, with a sore throat and headache, an intimate reminder that COVID hasn’t left.

In the early days of the pandemic, long haulers like Burgardt were ripe for medical gaslighting—when healthcare providers dismiss, minimize or psychologize illness. They aren’t the only ones. Medical gaslighting doesn’t just leave women uncomfortable or upset that doctors won’t take them seriously. It makes women sick and leaves them that way. And it’s going to keep happening unless we radically change the way women are studied and treated in hospitals.

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Modern medicine doesn’t understand women’s bodies as well as it claims to. Maya Dusenbery, American journalist and author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, calls it the knowledge gap: prior to the 1990s, across North America, heterosexual white cisgender men were the default subjects of clinical trials that studied the efficacy of new treatments and medications.

It was thought that the results of these clinical trials could be extrapolated to women. But the anatomy is drastically different: The sexes absorb and break down certain antibiotics, antidepressants and antipsychotics differently. Drugs can also affect cisgender women’s cardiovascular, immune and central nervous systems differently. The fewer women in clinical trials, the less doctors understand about their health and the safety and efficacy of drugs prescribed to them. Many women also have worse side effects—like hallucinations, headaches or nausea—than men to routine drugs like painkillers and antidepressants, but because of the lack of women in trials, these effects go unnoticed until they’re reported in doctor’s offices. Doctors became wary of prescribing medication to female patients and opted for less aggressive treatments or delayed treatment altogether.

After lobbying from women’s health advocates and healthcare workers, Health Canada released guidelines in 1997 and in 2013, encouraging drug manufacturers to include women in clinical trials. But these guidelines were just recommendations. (The National Health Institute in the U.S., on the other hand, made women’s representation in clinical trials a requirement for research funding.) We’ve made progress since the 1990s, but women are still underrepresented in clinical research, including in cardiovascular, ischemic heart disease and heart failure trials and various cancer trials. This has clinical impacts: In the U.S., women with heart disease, for example, are diagnosed later than men and are less likely to be offered aggressive treatments like coronary artery bypass surgery. Pregnant and breastfeeding women are almost always excluded, despite using the prescription drugs or medical devices that clinical trials evaluate.

Even if women are included in clinical trials, which sex-related differences researchers investigate matter. In 2021, women complained that the COVID-19 vaccine caused heavy bleeding and longer periods. Many doctors wouldn’t even listen to them: there wasn’t data to back up their claims. Although women participated in COVID vaccine trials, researchers didn’t study the vaccine’s effect on menstrual cycles. Women who reported these side effects to their doctors were met with skepticism and disbelief, thought to be peddling misinformation about the vaccine’s effect on fertility. (Studies have since proven the vaccine can cause irregular menstrual cycles.)

Clinical trials are also overwhelmingly white. Canadian data is limited, but according to American medical research, which informs how medicine is taught and practised in Canada, Black patients make up just around five percent of clinical trial participants. Similar to sex-based differences, people of different ethnicities may have experienced different environmental factors and can have specific genetic mutations that affect their response to medication. Carbamazepine, for example, is a common seizure drug prescribed to people with epilepsy, but in Asian patients with specific sensitivities, it may cause organ damage and serious skin reactions.

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We’re still playing catch-up: clinical trials last several years and sometimes over a decade, and it takes even longer for new research to become consolidated and trickle down into textbooks and curricula. We’re left with a library of medical research that’s vast yet incomplete, skewed toward men’s health. That’s informing how medical students are taught.

Dr. Onye Nnorom is a family doctor and public health specialist at the University of Toronto who graduated from McGill University in 2007. The default patient she studied in medical school textbooks was a 70-kilogram white cisgender man. “We’re taught over and over again that that’s the gold standard of a human being,” said Nnorom.

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One night in October 2006, Bee Quammie was alone in her Scarborough, Ont., apartment on the phone with a friend when she passed out. She woke up hours later with a crushing migraine, to the sound of her landlord and friend banging on her apartment door.

Her friend drove her to the ER, and her roommate stayed with her as a doctor scheduled a CT scan and other tests. When they came back clear, her doctor suggested she pop some Tylenol and wait out the pain. Quammie knew that whatever was happening to her, Tylenol wouldn’t fix it. She couldn’t sit upright or open her eyes unless the room was pitch black. She kept whispering to herself and cradling her body: “I need meds, I need meds, I need meds.” Her doctor was flippant. Her roommate overheard him telling a nurse that Quammie had wandered into the ER looking for drugs.

“If you apparently need meds that bad, we’re going to do a spinal tap,” he said, kneeling down next to her. “It’s really painful. And it’s not pleasant at all.” Quammie undid the back of her gown, motioning for him to stick the needle in. “Oh, she’s not kidding,” he said to himself.

Quammie went home that night with stronger medication (and without a spinal tap). But for weeks after, a cloudiness lingered and it felt like her brain was exhausted. She couldn’t sit upright for a week and a half without feeling dizzy. Random triggers, like the taste of chocolate or onions, brought the pain back. With no history of migraines, she still can’t explain what happened to her that night. Seventeen years later, she remembers it for a different reason: as a Black woman, she knows she can’t walk into an ER at her worst and expect to be taken seriously. Whenever she goes to the hospital now, she puts on some makeup and her Sunday best.

Medical racism is pervasive, subjecting racialized women to stereotypes that minimize their health concerns. It’s easy to dismiss doctors who act on stereotypes as one-offs, but that simplifies the effects medical racism has on patient care. A meta-analysis of 20 years of studies in the U.S. found that Black patients were 22 percent less likely than white patients to receive pain medication across various healthcare settings. Kids aren’t exempt either: another study from 2015 found white kids were almost three times as likely to receive opioids following appendicitis compared to Black kids.

Medicine’s racist history is partly to blame for these disparities. J. Marion Sims, widely considered the father of modern gynecology, made a name for himself in the 1800s by surgically repairing vesicovaginal fistulas—abnormal openings between the bladder and vagina. He perfected his technique by performing the surgery without anesthesia on enslaved Black women. This wasn’t uncommon: white physicians purchased and experimented on enslaved Black people between 1671 and 1834, sending their findings to prestigious medical journals. And while this practice wasn’t well documented here in Canada, Nnorom says that doesn’t mean it didn’t happen. Black people, these doctors presumed, were immune to pain, or worse, their pain didn’t matter. It’s unsurprising, then, that a 2016 study found that among 222 medical students in the U.S., almost half endorsed the belief that Black people had less sensitive nerve endings or thicker skin compared to white people.

These biases often go unchecked: Canadian medical and nursing students aren’t required to learn about their implicit or explicit biases before working with diverse patient groups. This perpetuates harmful stereotypes, impacting the care racialized women receive in hospital settings, and in more extreme cases, costs patients their lives. Joyce Echaquan, an Atikamekw mother of seven, was mocked by female staff at a Quebec hospital while she lay crying out in pain; she subsequently died. Brian Sinclair was an Indigenous man found dead in his wheelchair after spending 34 hours in a Winnipeg emergency waiting room in 2008. Hospital workers assumed he was just drunk and homeless.

Related: I Have Chronic Pain. Why Is Relief So Hard To Find?

If medical students are getting this training, Nnorom says, it’s still in its early stages. One of the only exceptions is the Northern Ontario School of Medicine (NOSM) in Thunder Bay, Ont. The school requires first-year medical students to work in an Indigenous community. Students witness the discrimination and racism Indigenous patients face in healthcare settings, prompting them to do better.

Dr. Randi George is Wet’suwet’en and of Métis descent, and she grew up on a small reserve in northern B.C. When she was a child, her uncle had an anaphylactic reaction to a bee sting. Her aunt rushed him to the nearest emergency room. The pain and lightheadedness made him stumble into the ER but doctors assumed he was just a drunk Indigenous man.

Dr. Roberta Timothy, a psychotherapist and Black Health Lead at the University of Toronto, knows of countless Black men and women who put off hospital visits until they can’t afford to—they don’t trust that they’re going to be treated like a human. “Gaslighting is kind of a nice word,” says Timothy. “But this is more like an explosion on the lives of Black, Indigenous and racialized people. And the result is death for our people.”

It’s a case for diversifying medicine: a higher prevalence of Black doctors decreases mortality rates among Black patients. These doctors need to be more than diversity hires if they’re going to uplift marginalized communities, and it starts with education and equity awareness.

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Alisa Gayle lived with a strange constellation of symptoms for two years. Her headaches were so severe that she told her family doctor she thought her head was going to explode. She had trouble hearing out of her left ear. In the fitness classes she led some weeknights at a Toronto gym, she would run out of breath, left dizzy and nauseous on the sidelines. Exhaustion and fatigue ate away at her.

Gayle first saw her family doctor around 2012. He chalked up her symptoms to excess earwax, stress and recurring panic attacks. He told her she was bipolar. Her doctor knew that as a teenager, Gayle was diagnosed and hospitalized with depression. Although she led a full life , he presumed that any new symptoms she was experiencing were related to the psychiatric diagnosis she received at 16.

Gayle was referred to a psychiatrist who put her on Seroquel, a medication used to treat schizophrenia, bipolar disorder and depression. She took a pill on Friday night and didn’t wake up until Monday morning. Well, I’m never taking those again, she thought.

She went back to her doctor a couple of times asking for a CT scan and other diagnostics. Her doctor declined to request them—she didn’t need them, he said. He convinced her that the symptoms were due to her deteriorating mental health. And even though she felt fine otherwise, she started believing him: maybe it was all in her head.

Two years later, in 2014, she was alone at a baseball game in New York City when she had a seizure. She woke up in the ER, with a doctor standing over her, looking puzzled. “Did you know you have a giant brain tumour?” the doctor asked.

Medical gaslighting has its roots in hysteria: a psychological diagnosis that was included in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders until 1980. It was a convenient catch-all that blamed women’s physical symptoms on their mental health. And while doctors don’t hand out hysteria diagnosis anymore, women are gaslit into thinking their illness is because of stress, anxiety or mental health disorders.

Research shows that women in chronic pain are more likely to be considered hysterical, emotional and lying about their pain compared to men. Another study published in 2009 in the Journal of Women’s Health found that middle-aged women with coronary heart disease were twice as likely to receive a mental health diagnosis than male patients, even when they had the same symptoms. One woman I spoke to for this story told me that she had her period for nine months straight when she was in university. Her doctor said she was just stressed.

Gayle’s tumour turned out to be benign, but she wasn’t in the clear—it was four inches long and pressing on her brainstem, making it hard to breathe. She flew back to Toronto for a 10-hour surgery. The recovery took months and she had to learn how to walk again. She’s lost hearing in her left ear. Her face was partially paralyzed but now, nine years later, it’s almost healed.

But if her doctor had believed her, Gayle wouldn’t have lost years of her life to sickness. She could’ve been diagnosed earlier, had her tumour removed and managed her symptoms better.

Women’s periods are another minefield of gaslighting. Doctors assume that it’s normal to have something inherently wrong with your period, whether that’s debilitating pain, heavy bleeding or long menstrual cycles.

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Tracey Lindeman, author of Bleed: Destroying Myths and Misogyny in Endometriosis Care, got her period at 11. Every month after, it was unusually long and painful—sometimes a constant dull ache and other times like someone was stabbing her in the stomach with a blunt knife over and over again. Lindeman saw a slew of doctors in her late teens and 20s and was put on birth control to manage the pain. She knew something was off, but the medical advice she received was often more of the same: she should lose some weight, change up her diet or experiment with a different brand of pills. One doctor even offered her antidepressants. At 35, a high-tech ultrasound diagnosed Lindeman with endometriosis, when a doctor saw her ovaries covered in lesions caused by the growth of endometrial-like tissue. She opted for a hysterectomy.

It’s not lost on her that it took 22 years of chasing doctors before anyone took her pain seriously. “When I finally had proof that it was real, that changed a lot for me,” she says.

Women who are gaslit by their doctors often carry these stories alone, convinced that they’re the problem or that they stumbled on a bad doctor on a bad day. When I was reporting this story, more than 100 women flooded my inbox all with versions of the same story: I was told to lose some weight, I was told it was because of stress, I was told nothing was actually wrong with me. Doctors are only human, weighed down by a collapsing system, contending with their own biases and imperfect training. Perhaps the most radical thing patients can do for their health is believe themselves.

“You live in your body every day,” says Lindeman. “You know better than anyone what that feels like.”

Update: This story has been updated to better reflect Dr. Randi George’s experiences in the medical system. This story has also been updated to correct Dr. Roberta Timothy’s job title.