Towards the end of secondary school, De Brabander fell ill. No one could tell her what was wrong with her, and so began a long search for answers. “They quickly blamed it on an eating disorder, or an anxiety disorder.” Irritable bowel syndrome (IBS) was also suggested. But none of these diagnoses turned out to be correct. De Brabander’s symptoms persisted and, looking back, were all too readily dismissed. It took years for the real cause to be uncovered: benign liver tumours, triggered by the use of oral contraceptives.
“It was a bizarre experience”, she says, reflecting on that time. “Firstly, because it took so long to get an answer. And secondly, because it turned out to be a side effect I was never warned about when I started taking the pill. I was shocked. I’d been taking something that could have quietly ruined my life.”
Treatments
Among friends and family, she began to hear similar stories. A friend, her mother, her boyfriend’s younger sister – all had experiences of struggling with unexplained symptoms that doctors had brushed off as IBS, for example. “Was that really what was going on, or was it just a convenient label to put on it?” says De Brabander. “And if the patients had been men, wouldn’t we have already developed treatments for these symptoms?”
De Brabander is quick to stress that she’s not an expert on sex and gender differences in medical research. What she wants is to raise awareness, having experienced firsthand the consequences of “pushing everyone through the same funnel”. In 2023, she took part in a summer school organised by the Netherlands Organisation for Health Research and Development (ZonMw) at Erasmus University Medical Centre in Rotterdam, focusing on sex and gender differences in medical practice and research and how to account for them in your own research. One thing she learnt is that some studies exclude women on the pill, as they’re considered a separate participant group and including them would drive up costs.
De Brabander’s own research focuses on antipsychotic drugs and how a person’s DNA can affect how these drugs are broken down in the body. Once again, most participants in these studies are men – psychotic disorders are more often diagnosed in men than women – and treatments tend to be tailored to male bodies. “For example, antipsychotics can lower oestrogen levels in women, which may worsen psychiatric symptoms. Doctors often respond by increasing the dosage, but that’s counterproductive and traps the patient in a vicious cycle.”
Side effects
Previous research has shown that most medications are not properly tested on women. And when women are prescribed drugs, they’re often given standard dosages originally developed for male bodies. Unsurprisingly, women report more side effects; men either don’t experience as many issues or simply don’t report them. “We’re talking about things like weight gain and constant nausea – not just minor inconveniences. Yet doctors will often say, ‘Well, the drugs are working, aren’t they?’ Maybe they are, if you’re a man. But women are expected to just put up with the extra weight or discomfort, and they’re far too easily dismissed or waved aside. I think it’s deeply unfair.”
In her own research, De Brabander tries to account for differences between men and women wherever possible. Sometimes it’s as simple as including a question about sex and gender in a survey. But she knows that real change will require much more. “Money is the most important thing. Last year, the Ministry of Health, Welfare and Sport allocated several million euros for research on women’s health issues like endometriosis, which is a good thing. But it’s also about how that money is distributed. Research on women’s health issues consistently receives much less funding.” And there’s another factor at play. “Male researchers and professors are overrepresented. They’re the ones doing the research – and the ones who have to provide the answers. But they tend to have different priorities, seeing topics like menstruation or contraception as less relevant. Historically, these topics have always received less attention.”
In her spare time, De Brabander is active in the Dutch Society for Gender and Health. She’s calling for medical education to pay more attention to the differences between men and women. But cultural change is needed, too. “Most women don’t talk about things like menopause or getting an IUD. It’s like we’ve collectively agreed not to bring them up. But we could do with a bit more outrage about how little we still know about women’s health.”