hysteria: a history of healthcare bias against women
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for decades, susan cape struggled with migraines that presented differently than the typical. vertigo, visual distortions, and neurological symptoms were her hallmark signs of attack. for susan, since her condition didn’t fit a particular mould, her physicians treated her as if it was all her mind playing painful and confusing tricks on her.
“a lot of that comes down to, i believe, deeply held biases that some people have toward women—that women are more anxious, that they suffer from a lot of mental health issues, that we’re very hysterical,” she said.
“when we complain about pain, and we complain about troublesome symptoms, that’s really what it comes down to. it’s not that there could be anything wrong. it’s that we’re dealing with something more in the mental sphere of our life, which is completely wrong.”
despite major struggles with migraines and gynecological issues for many years, susan, a registered social worker and phd student at mcmaster university and school of social work, was continually brushed off and dismissed.
“i would tell him (her doctor) every time i had a physical. i am bleeding so badly. i soaked through a 10-hour pad in less than an hour. this isn’t normal. this pain isn’t normal. he would completely dismiss it,” she said.
during the covid-19 pandemic, susan started experiencing “really weird” symptoms. at the time, she gaslit herself into thinking it could have something to do with being vaccinated because she had previously been diagnosed with polyps, a diagnosis her doctor assured her was nothing to worry about. but something in her gut made her return to her obgyn for another check.
“she (obgyn) did an exam that day … and she said, ‘you know what? stick around, and i’m going to do a biopsy,’” susan recalled.
the biopsy revealed endometrial cancer—left to grow inside her as a result of continual pleas for help going unheard and symptoms going unchecked. susan requested a biopsy several times over the course of a few years. a short time after her diagnosis, she had a hysterectomy to clear the body of the cancer.
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“i just got lucky,” she said. “had she not done that biopsy, which was a pure fluke, she would not have diagnosed me, and i would have just had this cancer until it was too late.”
the haunting reality is that susan is not alone in her experience.
according to a report conducted by women’s health policy in 2022, 29 per cent of women have had their health concerns dismissed by their physicians, 15 per cent found their health concerns were taken as lies, and 19 per cent had their doctors come to a conclusion about their health without asking any important follow-up questions.
the women’s health coalition of canada, a national organization geared toward disrupting the status quo in women’s health care, also conducted a survey looking into the state of gynecological health in the country, which showed 29 per cent of women failed to receive referrals for gynecological care after expressing related concerns.
patients expressed their disappointment in various ways, from feeling rushed by their healthcare providers during appointments to experiencing a ‘not-my-problem’ effect in which their doctor, disinterested or not well-versed in the topic, pawned them off to another physician.
the data paints an alarmingly bleak picture of the current state of the healthcare system for women. to understand how it got here, it’s vital to understand the foundation that has shaped and perpetuated the sex bias.
bias begins in clinical research
clinical research is the basis of all medical care, allowing pharmaceutical and medical innovation companies to test out newly developed drugs and interventions to prove their efficacy. all medications go through clinical trials before they become available for public consumption.
since the beginning of modern medicine, males have predominantly been both conductors and participants in clinical trials.
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women were often seen as nothing more than smaller and more defective men—a view that began as early as the third century bce when philosopher aristotle posited that women were just the inverse of males due to the genitalia being turned inward.
but that’s simply not the case. male and female biology is unique, and those differences cannot be ignored in healthcare and medical research.
dr. lorraine greaves, a leader in global women’s health, senior investigator at the centre of excellence for women’s health, and appointed chair of the scientific advisory committee for health canada, notes that understanding the differences between male and female physiology is the only way to unravel the biases and long-term issues that cause clinical trials and healthcare to negatively affect women’s health.
it’s all about recognizing “that there are sex differences, but there are also sex and gender-related factors that really are mechanisms that we have to learn more about.”
various areas of health, including reproductive hormones, the development of diseases, and the way the body absorbs and utilizes medications, are all examples of those differences that should be considered in clinical trials and medical research.
the policies surrounding the inclusion of women in clinical trials began in 1949 with the enactment of the nuremberg code, a set of ethical guidelines to be used when testing medical research on humans. it was based on ten set principles and was initially developed to ensure that the abuse the nazis put forth in human experimentation during the second world war could not happen again. this document became the standard and was used as a basis for regulations developed in canada.
however, the nuremberg code did not take into account the needs of special populations, which included pregnant women and children, as they were not able to voluntarily consent to such research.
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back then, women also lacked autonomy over many areas of their lives, unable to engage in many activities or business dealings without the consent of a husband—though data is next to impossible to find regarding whether enrolling in a clinical trial was one of those activities.
“historically, when research started out, white males were recruited, and that became the norm. they were hesitant about recruiting women in clinical trials, especially during pregnancy, because of liability issues and the unknown effects of untested medications on the unborn,” said dr. nikita pai, an indo-canadian associate professor at mcgill university and physician scientist at the mcgill university health centre research institute.
“but it extended beyond pregnancy to reproductive periods, the impact of hormones, and like it is with any blanketed policies, it impacted recruitment of participation of women.”
then came the thalidomide tragedy. in the mid-1950s, a new drug developed to treat nausea in pregnant women went to market without any testing on pregnant women or even pregnant animal subjects prior to its use in humans.
thousands of infants were born with significant congenital disabilities, including shortened or absent limbs, malformation of the hands and fingers, ear and eye damage, facial disfigurement and palsy, structural damage to the brain, internal organs, and skeleton and sensory impairment.
as a result, women were barred from clinical trials for decades.
“that’s really a stark example of where you can end up if you don’t do research on certain groups of people who end up using drugs,” said dr. greaves.
it wasn’t until 1995 that women’s health was officially introduced as a vital and critical component of the overall global effort by the united nations and the un’s fourth world conference on women. the strategic objectives were outlined, stating that research on women’s health must be conducted, promoted, and supported by all official government health authorities.
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that push from both the public and then the un made waves in the medical community, and in 1997, health canada created new guidelines allowing women back into clinical trials.
hysteria and the faulty foundation of modern healthcare
cynthia toussaint was diagnosed with anorexia when she was 12 years old, complex regional pain syndrome (crps) at 21 and cancer at 59. she was a dancer and performer in her younger years before a torn hamstring in her right leg set off the crps and brought with it a healthcare journey clouded in misogyny and misdiagnosis.
“it started with sexual stuff. a lot of doctors and other healthcare providers, they were all males. they were asking me out a lot. they didn’t like it when i said no,” she said. “one of the first doctors i saw, he drew a picture of a hamstring, and he said, ‘yours is very tight, and that’s the way we men like our women.’”
as she was leaving that appointment, the doctor yelled out to her that his prescription for her ailment was to “take care of those gorgeous legs.”
after being dismissed and objectified, she was also designated a “problem patient” for continuing to seek treatment. her doctors began misdiagnosing her with other ailments, one being stage fright, and mocked her choice of career, arguing that she “needed to give up this foolish notion of dancing and be what you should be, which is a housewife and a mother,” she recalls.
even after the sexual harassment and dismissal of her pain, cynthia continued to fight for her right to care—only for things to get worse.
she underwent an endoscopy after the pain radiated into her vocal cords, which came back normal. her doctor’s response to the results was that cynthia was “making a mountain out of a molehill.”
another doctor claimed that her pain was psychological because, at one point in her medical records, she was experiencing anxiety.
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“so many women were abused, and we feel a lot of shame because we’re like over-complainers, and we’re all these terrible things, and we’re told that we have psychological problems,” she said.
it took 13 years for cynthia to get a formal crps diagnosis. today, she is the founder of for grace, a non-profit organization geared toward spreading awareness and education regarding the disparities women face when seeking treatment for chronic pain.
“women have psychological problems. you’ve heard that. they’re hormonal. they’re drama queens. they certainly can’t be trusted with their own self-report of pain … as a result, they gaslight us, they abuse us, they say horrible things to us,” she said. “we talk about how our pain affects our daily life and our daily relationships. we can get emotional. we can cry, (but) if you cry, forget it. any nurse will tell you the doctor went back and said, ‘yeah, it’s clearly in her head.’”
women’s rights have come a long way. yet, the catch-all diagnosis of “hysteria” wasn’t removed from the diagnosis and statistical manual of mental disorders until 1980, just over four decades ago.
hysteria, a now unaccepted health condition because of its lack of any real basis, was introduced as a physical ailment in medical literature in 1880 by jean-martin charcot, a french neurologist and professor of anatomical pathology. before that, it was mentioned in ancient greece and egypt.
“hysteria actually comes from [the word] uterus, which is ‘hystera’ in ancient greek,” said dr. tamil kendall, director of the partnership for women’s health research canada. “there were philosophers like plato and aristotle at that time that certainly saw women as defective. they actually didn’t think that they were very similar to men, and they thought that all kinds of physical and mental complaints were caused by the womb wandering around the body.”
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other theories posited that retaining menstrual blood was the cause of all women’s health issues, with male semen believed to be the cure because it had healing properties. sigmund freud, who was a student of charcot’s, thought that psychological damage was what caused females to become ill with hysteria, a trauma that developed when females realized they had no penis and were too emotionally volatile to cope with that significant loss.
“physicians ascribed the causes of hysteria to problematic female sexuality, basically. so, there’s been a long association of stigmatizing women’s sexuality,” said dr. kendall.
even something as real as a heart attack can be minimized when symptoms are reported by a female. a study published in 2000 found that the misdiagnosis of women having heart attacks due to differentiating symptoms, the dismissal of pain levels in women, and the understanding of heart attacks based on male physiology led to women dying at a rate of seven times more than men.
according to a study published in nature, the lack of timely diagnosis in women versus men isn’t just for heart attacks because they present differently – it’s for most diseases that exist.
for example, when a woman develops cancer, it takes roughly two and half years longer for them to receive a diagnosis as opposed to men. when it comes to metabolic diseases, such as diabetes, that number almost doubles to four and a half years.
the study also concluded that later diagnoses are more likely to occur in diseases that typically affect females based on the anatomy unique to them, even in males who develop them, leading researchers to question the why behind the discrepancy.
more data from the uk found that female patients wait longer than male patients across the board in at least six out of 11 types of cancers, with another study citing that women had to make three or more visits to their primary doctor to have their symptoms taken seriously at a rate double that of men when trying to get proper adequate diagnostics for suspected cases of bladder cancer.
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“it can take years for women to receive a diagnosis,” said sharlene rutherford, president and ceo of the royal alexandra hospital foundation. “there isn’t the focus on women’s health that there should be. and let’s face it, there should be. we’re not a small interest group. we’re half the population.”
‘you just have to live with it’
susan recalls her doctor telling her, in the simplest of terms, that she would just have to learn to live with the symptoms of her migraines, even before she had a proper diagnosis.
“i remember that last appointment … i kind of stopped in front of her, and i said, ‘okay, well, what do i do? because i can’t live like this. i’m dizzy all the time. i want to throw up all the time. this is awful.’” susan said. “and she’s like, ‘well, you just live with it.”
her body began faltering in other ways to make up for the stress of living with an undiagnosed health condition.
“i started to experience panic attacks for the first time in my life, and i was never an anxious person,” susan said. “that was never me. but i just kind of pushed through, and i’m still working. i was still trying to live my life.”
demeshia montgomery, a professional patient advocate who works with patients rising, created bipoc programs and is a board member for for love of children, was diagnosed with scleroderma—a painful autoimmune disease that causes the skin and other tissue to harden—when she was 19 years old. and yet, that didn’t make her treatment path any easier.
“when i go to the doctors, i’ll say, yeah, i’m in a lot of pain, but because they can’t physically see me crying or see me very upset, a lot of times, they’ll say, ‘oh well, it’s not a big deal.’ they would say it’s not a big deal. i didn’t need anything.”
over time, demeshia has had to go through several surgeries and seven finger amputations because of her scleroderma, all while being told the pain isn’t enough to warrant medication by both healthcare providers and specialized pain clinics that she was sent to.
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she notes that even when following all the rules and doing all the right things, she still has had to fight to prove that her experience is real and that she needs help.
demeshia turned to other methods to cope with pain, such as alcohol use and over-the-counter medications, leading to her questioning “the whole healthcare system.”
dr. aisha lofters, a family physician who dedicates her time to cancer screening and prevention, as well as health inequalities in communities, understands from her work that women are not taken seriously, and they end up paying for it.
“this minimization of symptoms, which can mean women might have to deal with symptoms longer, take longer to get diagnosed, have to present them multiple times to have a serious issue addressed,” she said, “which is what continues the cycle of women receiving worse care for their conditions.”
in some cases, women even end up minimizing their own experiences because of the widespread blame, especially if they were dealing with health issues prior to the age of the internet in the 1990s.
kathleen sutherland’s story began with a skateboarding injury when she was 15 years old. she began to experience chronic pain in her 30s and was told it was likely arthritis as a result of the old injury. but when the x-ray came back negative, the support through her pain all but vanished.
“i was just dismissed because the x-rays didn’t show anything,” she said.
eventually, she was given a catch-all diagnosis of fibromyalgia without even being given a formal test and sent on her way to deal with it on her own. she came to rely on herself to find answers. she’d go to see her doctors and make suggestions about what could work, essentially planning her own healthcare and finding people who could perform the procedures.
“you’re completely on your own with these sorts of things,” she said.
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“during the 90s, there was all this health help that basically said everything’s your fault. it’s all psychological and spiritual,” kathleen continued. “i kind of wanted it to be my fault or a psychological problem because i can’t solve my nervous system going haywire.”
she leaned into self-blame and the idea that “we create our reality with our thoughts” as a way to tackle her chronic pain. she became buddhist and took up meditation practices. she cut out sugar and gluten and focused on getting her diet right. she tried all the specialized diets under the sun—vegan, paleo, intermittent fasting—and nothing worked.
she convinced herself that she was to blame and that she could “find the solution” because of the perpetuated idea that women are creating their own health issues in their heads.
rutherford notes that the result of this minimization and downplaying of symptoms is worsening health outcomes for women, a reality that is all too familiar for people like susan, cynthia, demeshia, and kathleen.
“we start to normalize conditions, right? we continue to do that today,” she said. “so, you have a heavy period, a very heavy period. that’s normal. you’re curled up in bed in the fetal position for two days because of your period. well, that’s pretty normal for many people. you understand the language, right? we minimize the symptoms, and we’re not doing women any favours when specialists and gps do this and when we do it to ourselves.”
chronic pain is a glaring issue that is often downplayed in women. according to research, women who go to emergency rooms with pain as their primary symptom are frequently left waiting to be evaluated at a rate of 29 per cent longer than men.
women with acute abdominal pain are also denied painkillers 25 per cent more than males. when a middle-aged woman complains of chest pain to a medical provider, she is twice as likely to be told it’s due to a mental health condition than men who present with the exact same symptoms.
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demeshia was labelled a drug seeker and denied the right pain medication for a very long time.
“it took me years to get that out of my [doctor’s] notes,” she said. “but i had to suffer that whole time.”
paving the way for equality
things are moving in the right direction, albeit at a glacial pace. women in the medical research field are also paving a new path toward inclusion to ensure that the sex bias does not continue for another 200 years.
“we need more women leaders in the healthcare space to change the reality for other women. we need more male allies to speak for women, to make space for women,” said dr. pai.
demeshia believes that, while things are still far off from where they need to be, the trajectory towards more inclusive care is going in the right direction.
“at least they’re including us in the conversation because before, all the decisions were being made without us, even in research,” she said. “now, they are starting to do more panels, more committees, things that are including patients. the pharmaceutical companies are doing that, but we’re still far off.”
since much of healthcare begins with research, this is the first step in changing how women are seen and treated by healthcare professionals.
that said, enacting better recruitment strategies alone will not grease the wheels of movement in the positive direction. everything from the highest level–public policy, funding, and government to how individual healthcare providers treat and interact with women who need healthcare–needs an overhaul.
teresa norris, founder and president of hpv global action and women’s health advocate, has seen just how detrimental the healthcare system can be for women because of how far-reaching the issue is and how many sectors are involved.
“the policing that happens with women’s health at a political level, the comfort and discomfort around women’s bodies is very restrictive. we’re not seeing those same legislative issues around males,” she said. ”unfortunately, it’s an ecosystem that we’re working in when it comes to women’s health issues, so right off the top, if that’s the umbrella that we’re working under, it trickles underneath. women aren’t taken seriously, and they don’t know that they’re not being taken seriously.”
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from the top of government legislation to the doctor’s office, every single building in the healthcare compound is sitting on shaky ground. and building a new system from the ground up isn’t an easy task.
“changes take time, and i think we are in situations where we have women around the world that are leading countries. so, i do think that there is an important shift that’s very much underway, but we’re still not at a place where it’s been happening long enough,” said norris, later continuing, “do women feel taken care of? do women feel they’re taken seriously? no. do women have a good grasp of what’s happening in their bodies? no.”
susan believes that self-advocacy is one of the only ways women can be heard today, but also notes that it’s a “double-edged sword” because, to put it simply, they shouldn’t have to work so hard for adequate care.
“i’d like to see or imagine a world where physicians could show a little bit more humility and that patients wouldn’t be expected to take on all of those roles simply to get some type of care or help.”
in the meantime, norris suggests that women must keep speaking up and fighting to be treated as equals because that’s the only way to foster fundamental change.
“we have to be brave. i think it’s at the time where women leaders have to be brave, where women have to be brave.”
international women’s day is saturday, march 8, 2025. the government of canada’s official theme is “strengh in every story”, shining a light on the voices of all women and understanding the barriers they face on the path to success.
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we extend our highest gratitude to the women who have participated in this article. from those who shared their deeply personal and often harrowing experiences while seeking care to those who work on the front lines in medicine, advocacy, and research to end sex bias in the medical world, we are grateful to you. we stand with you to amplify your voices in the hopes that sex bias will one day be a thing of the past. thank you. – the healthing team.
from top left, clockwise to bottom left and centre: dr. aisha lofters, lorraine greaves, cynthia toussaint, sharlene rutherford, kathleen sutherland, dr. nikita pai, dr. tamil kendall, demeshia montgomery, teresa norris and susan cape.
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