#doing harm

When people hear of conditions like Fibromyalgia, ME/CFS, Endometriosis and Lupus, they are often only vaguely aware of what they are and almost always ignorant of how they affect individual sufferers. There are so many different illnesses out there and no one person can know of all of them.  But the above mentioned are in fact quite common, and I bet you know of someone who has at least one of these syndromes/diseases.

You might assume that, given their prevalence, a great deal of research and funding has gone into these illnesses, but the opposite is true. These conditions primarily affect women, and medicine was and still is a largely male-dominated field, from almost all-male animal studies to majority male human studies. The gatekeepers to the profession are also mostly men, meaning they are less likely to study illnesses that especially affect women. Indeed, non-life threatening illnesses dominated by female patients often lack funding and research and are poorly understood by GPs and specialists alike.

In Maya Dunsenbery’s new book, “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed and Sick”, the historical reasons for this stark gender bias in research are laid out, along with the long-reaching consequences that affect women to this day.  While some progress has been made in recent decades to address the problem, serious issues remain, right from the preclinical start.  On the topic of animal models, she writes:

“The persistence of male animal models is especially troubling when it comes to conditions that are more common among women. As the authors of a 2009 review of the male bias in basic pain research concluded, given that women are disproportionately impacted by chronic pain disorders, ‘one could argue that preclinical research that excludes females is incomplete at best or invalid at worst’. Nevertheless, a 2005 study found that nearly 80% of animal pain studies published in recent years had used only males”.

The argument most often given for all-male models in rats and mice is that females have hormonal cycles that could muddy results. The same argument was used to exclude women from studies, and still is used to exclude menstruating or pregnant women. But think of how ridiculous that argument is.  If the problem is that the female physiology is different in that it’s affected by hormonal cycles, then isn’t it essential that we do all-female studies on a new drug or treatment?  Shouldn’t we investigate how a dose of medicine could have different effects on the female body than the male (we do this for alcohol) or how symptoms of say, a heart attack differ in men than they do for women?  I could go on and on with examples, but the fact remains that women are dying because sex-based differences are NOT being explored, because male is assumed to be the default.  You can’t have it both ways.

Dusenbery writes, “…if the results of the study do vary significantly due to fluctuations in ovarian hormones, that’s all the more reason females needs to be studied, no matter the cost”.

The reality is that right from the get-go, women are left behind in medical research and therefore treatment, and it’s even worse for women of colour and low-income women. There are also persistent attitudes towards women’s pain and suffering, stemming from long-held myths surrounding hysteria (now known as “conversion disorder”) and that women are just delicate beings who suffer more from imagined problems (the “it’s all in your head” argument has pernicious roots).  Women with Fibromyalgia and other similar ailments are often dismissed or given the wrong treatment.

In her piece, “Chronic Pain and the Denial of Care for Black Women,” Alexandra Moffett-Bateau writes, “In an article for the New York Times, Laurie Edwards, author of In the Kingdom of the Sick, argues that women are sent to therapists, instead of provided pain management, in large part because they are frequently assumed to be overly emotional and hysterical by emergency room doctors. When the patient is young, Black, and feminine-of-center, her assumed lack of believability is compounded by the intersection of her identities.”

 There are few, if any areas in life, that aren’t affected by sexism and discrimination. As a woman-identifying person navigating this world, you can’t be thinking about how the patriarchy is affecting every facet of your life – it’s too exhausting, and depressing, to continuously contemplate. But we DO need to think about how gender bias in medicine is affecting our healthcare. Women are falling through the cracks and many are dying as a result of this criminal lack of care and understanding. If the system doesn’t fail them and lead to their suffering or death, some simply give up after a long, fruitless journey, and take their own lives.

Chronic illnesses that primarily affect women are being underfunded and under researched and that needs to change, not just because it’s unjust, but because this bias against properly investigating and understanding women’s health conditions is something that negatively affects us all. As feminists, we need to advocate for better rules and policies governing the way medical studies are performed, analysed and taught.  Advocacy groups around the world have been fighting hard for better inclusion and representation of women and other groups within mainstream medical research, but they need public support in order to be successful.

“It’s important to remember the role that grassroots advocacy played in getting the knowledge gap on the radar to begin with, Pinn says. ‘It was advocacy by individual women, groups of women and then women in positions of power’ – within the biomedical community and Congress – ‘who really brought forward the concept of women’s health’. They challenged women’s exclusion from clinical research, demanded greater attention to neglected women’s conditions, and raised the concern that there may be important sex/gender differences that ‘hadn’t been considered important enough to study’”. [Doing Harm, pg 57].

While we have made progress over the decades, there is still a long way to go. So next time you see a fundraiser for a woman-dominated illness, please consider donating. Write to your representative about the importance of stronger rules that force medical institutions to include women and minority groups in their research. Support your local women’s health centre or advocacy group.  Get active and get out there. Without pressure from the people, things aren’t going to advance any further. It’s time to stop leaving women behind in healthcare.

 Tessa Barratt is the President of The Sydney Feminists. She is also a sufferer of Fibromyalgia, Myofascial Pain Syndrome and Irritable Bowel Syndrome. Like most people with chronic pain, she is tired of the endless carousel of doctors and specialists who appear to know nothing about her illnesses, and is on a quest this year to advocate for better research in women’s health.