Catherine Gladwyn knows what’s coming before the words have even left her doctor’s mouth. She’s heard them so many times before. She’s left this room – and others like it – knowing that there is something deeply wrong with her. She feels it in her every movement, throughout her whole body. But mostly she feels it deep in her gut. She’s terrified because no one believes her. She’d hoped that this time, finally, she wouldn’t leave defeated. So she tries again as the doctor’s eyes dart to her watch. “This is not normal,” Catherine pleads. “I promise, something isn’t right.” Pausing, the doctor leans forward in her chair and asks, “Do you think you might just be a bit stressed?”
Eight months later, Catherine is being wheeled into an operating theatre, the white noise of machines punctuating her every breath. She is about to undergo the first of many surgeries for a brain tumour. The tumour that she was told over and over again did not exist. She’d asked for second, third, even fourth opinions – and still medical professionals told her that she was fine. They insisted that this tumour, which had been growing inside her for almost two years, and was six months away from causing her to lose her sight, was stress; depression; even early menopause. She’d leave bare rooms clutching mint-green prescription slips for antidepressants, beta blockers for panic, tablets to kick-start her periods. All the while, her body screamed, “Why won’t anyone listen to me?”
Like the doctors who repeatedly turned 35-year-old Catherine away, it might be easy to dismiss her story as an unfortunate accident. These things happen; illnesses are missed and misdiagnosed every day. But there is a silent question we should all be asking ourselves: had a man presented with the same symptoms, would he have been diagnosed faster? We will never know for sure. Each case is different – it’s impossible to pinpoint the exact cause of misdiagnosis.
And yet… something is stirring in healthcare. It seems that in the same way gender discrimination affects our offices, pay packets and relationships, it may also be impacting our health. Research shows that women are more likely than men to die in situations where CPR is needed. We’re more likely to wait longer for certain cancer diagnoses. Over the last 10 years, it’s estimated that over 8,000 women in the UK have died as a result of heart disease that was misdiagnosed or mistreated due to gender bias. And, as Catherine knows all too well, women are twice as likely to suffer delays in brain tumour diagnosis. But how, exactly, has this gender health gap opened up? And what – if anything – can we do to stop it?
To understand how we got here we have to go back – way back – to the 15th and 16th centuries, when sewage coursed through the streets and criminals (predominantly men) were hung at the gallows. Their bodies were then collected by physicians for dissection and this was how human anatomy was studied; how medications were developed – on these scavenged male bodies. Three centuries later – when women were still not allowed to be doctors – “hysteria” was almost exclusively the diagnosis given to women with a wide range of complaints, from anxiety to fluid retention.
This may seem as irrelevant as giving patients frogs to swallow for their asthma (yep, that really happened) but it has all paved the way for our current healthcare system today. Our doctors can’t officially diagnose us with hysteria any more, but 74% of Cosmopolitan readers said they have been made to feel that they were overreacting by a medical professional. A 2015 Yale cardiology study found that many women, especially younger ones, delayed or completely avoided seeking medical advice for a suspected heart attack because they were concerned they would be considered a “hypochondriac”.
As for medical studies? Learning from male bodies is frequently still the default. Subjects in medical trials are, historically, more likely to be male, as are the mice used in laboratory-based drugs-testing. The Medical Research Council (MRC), which funds and helps to coordinate medical research in the UK, told us that they were yet to produce guidelines on study design relating to the sex or gender of participants in clinical trials and studies. “But we recognise this is an important area to look at for policy development in the future,” a representative said.
Dig even deeper and you’ll find further imbalances: Black women in the UK are five times more likely than white women to die in childbirth. Gay, lesbian and bisexual people are considerably more likely to suffer physical and mental health problems than their heterosexual peers, and for those in the transgender community there is an even smaller pool of data with which to understand their health concerns. We have come so far in talking about social injustices – and yet healthcare is still lagging behind.
Often, while sitting at her desk in school, Becca Fowles would be doubled over, as an unexplained pain ripped through her stomach. From the age of 14, every time her period came she’d spend days at home curled up in bed with heavy bleeding and nausea. She spent 12 years going to doctor after doctor, most of whom told her what she was experiencing was normal, that it was simply period pain. They prescribed numerous different contraceptive pills to stop her periods, and sent her for counselling she didn’t feel she needed. “I started to convince myself it was all just in my head,” she says.
By 25, Becca’s symptoms had worsened. The pills had stopped helping and she began having pain when she urinated. She returned to the doctor several times, only to be given antibiotics for a UTI she was sure she didn’t have. She was diagnosed with endometriosis a year later (after a referral from a gynaecologist) and had surgery. It didn’t help. She was still in pain. Her doctor told her, once again, that her pain wasn’t severe enough for more surgery. She kept pushing until they found more endometriosis inside her bladder. After three operations, Becca had an operation in her spine to insert a pacemaker in her back that sends electric pulses to her urethra so she can urinate. Now 34, she
is currently awaiting a further operation.
While it can be hard to gauge exactly how much pain someone is in, as we all have different thresholds (doctors ask patients to use scales to rate pain, as well as words like “sharp”, “dull” or “achy” to decipher what’s going on), research has found that women are often thought to be equipped with a “natural capacity to endure pain” – assumed to be a result of their role in reproduction. The problem with this fallacy is that it affects the treatment women receive. Research has shown that women are less likely to receive aggressive treatment for pain, and more likely to have that pain reported by their doctor as “emotional”, “psychogenic” and “not real” (according to a seminal study from 2001). The study also found that when in pain, men are more likely to be given painkillers, while women are more likely to be given sedatives or antidepressants. In short, for centuries the presumption has been that being a woman inherently hurts. Periods hurt. Sex hurts. Menopause hurts. And if you can’t tolerate that, then there’s something wrong with your mind, not your body.
Every year, as a new term rolls around, thousands of eager 18-year-olds enter medical school for the first time. They arrive with their new duvet sets, textbooks… and their own in-built unconscious bias. It’s different for everyone – life experiences and how we are raised play their part – but we all have it: neuroscientists have found that it begins to from at a very early age. Medical training is not only based on information taken from male-focused studies, but it is also taught in a way that affirms pre-existing prejudices – regardless of whether the doctor is a man or a woman.
“Obviously, there’s a lot to learn in medical school, so often we’re taught to recognise patterns; things that are common,” explains Dr Natalie Ashburner, a psychiatry registrar working in the NHS and member of the Doctors’ Association UK. “I think this can lead to certain groups not being recognised when we’re looking at how to treat them.” If your symptoms don’t fall into the pattern – a pattern that is built on data and details from gendered studies – then the chances of a health condition being recognised decrease.
Scientists believe the reason our brains are prone to unconscious bias is because clustering people into groups helps us navigate the world without being overwhelmed. Combine that potential for prejudice with the overstretched NHS and it’s no surprise that some doctors fall back on pattern recognition.
“The only way we’re ever going to recognise biases is if we pull ourselves up on them,” says Dr Sarah Hillman, a GP and clinical lecturer. “For many years I was blindly practising, unaware of my own biases. It’s only when I started to call myself out on them that my awareness grew: ‘Why have I had that feeling about somebody?’ Unless we all start doing it, we’re at risk of practising the same medicine forever,” she warns.
As it stands, all NHS staff have equality training every year, although the doctors we spoke to – 10 in total – say this is usually a 30-minute online course followed by a quiz. It doesn’t interrogate your individual biases and how you might treat someone differently as a result.
Acting on preconceptions impacts us all. Whether it’s missed breast cancer in men or untreated heart disease in women, harm is caused by rigidly adhering to stereotypes on both sides. Nobody would intimate that doctors wilfully discriminate against women, but unconscious bias is exactly that – unconscious. It permeates every aspect of our society like the oxygen we breathe. It’s the reason we think of men when we hear the word “surgeon”, and why the “hysterical woman” narrative still plays out across our TV screens.
Bias – it has to be said – goes both ways. It’s there in the man who has been told he has to be “strong”, so that when he faces a mental or physical health problem, he refuses to see his doctor until it’s too late. Men visit their GP less than women, and suicide is still the leading cause of death in men under 50. On top of that, of the 40 leading causes of death, 33 are more common in men. This is down to a number of factors, but experts believe it’s largely environmental – men are more likely to self-medicate with alcohol and drugs. They’re more likely to be in car crashes, as a result of driving dangerously. They’re told they have to be one way – and it causes them immense harm. So yes, men do face their own struggles when it comes to health – obviously they do. But what men face is different. Women are fobbed off more, sent away, diagnosed differently or, at worst, not at all. Bias exists everywhere. The stakes are just much higher in medicine. And in 2020, no organisation is under more pressure than the NHS.
Technology is often hailed as the breakthrough that could relieve pressure on the NHS, which, in turn, could create a more level playing field when it comes to diagnosis, treatment and gender. GP apps and AI-integrated healthcare could also be an opportunity to rewrite the rulebook. After all, AI has no opinions on sex and gender; it doesn’t look at data through a veil of prejudice. Or does it? Healthcare app Babylon came under fire last year after it was discovered that the algorithm advised a male smoker reporting sudden chest pain and nausea to go to A&E, but told a woman of the same age, with the same profile and symptoms, that she was likely having a panic attack. Babylon pointed out that their Symptom Checker was not intended to be used as a diagnostic tool – and that
the woman also had a background of previous panic attacks. The checker, they said, makes calculations based on data from a huge number of research studies. But if those research studies are based on male subjects, doesn’t this mean tech-based healthcare will have bias coded into it? After all, only 24% of people working in STEM (science, technology, engineering and maths) are female.
“There are very few women in the industry,” says Sonia Antoranz Contera, a physicist who specialises in nanotechnology and campaigns to get more women into STEM. “When you have a broader community of people developing technology, you’ll naturally understand the context in which it’s going to be used far better. If you just have a bunch of men talking
to doctors, it’s not only the topic that will be affected but the way the technology is developed.”
Both Catherine and Becca still feel angry, and struggle to trust doctors now. In some cases, the kind of tumour Catherine had could have been managed with drugs, as opposed to surgery, while Becca often wonders what would have happened if her endometriosis had been diagnosed when she was a teenager. Ultimately, they both just wanted to be listened to. When they finally saw doctors who did just that, their first overwhelming sensation was one of relief – rather than sadness at their diagnoses. Relief that they had been taken seriously and that they weren’t “hysterical”.
“Doctors are, on the whole, compassionate people who want to help,” says Dr Ashburner. There are also times when your doctor is right – it is stress. Our compulsion to consult Dr Google can often leave us with scary but unfounded paranoia. Still, the gender health gap is as real as the repercussions it causes – and it needs to change. Speeding up the rate of female inclusion in studies and undoing the decades of biased medical-school learning will take time. But the conversation is happening. And, until then, we can assert ourselves when we know something is not right. Stop at nothing until your voice is heard. Bias does not stand up well to being called out.
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