Q&A with Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick

ListentoWomen.jpgEditor of the award-winning site Feministing.com, Maya Dusenbery brings together scientific and sociological research, interviews with doctors and researchers, and personal stories from women across the country to provide the first comprehensive, accessible look at how sexism in medicine harms women today.

We sat down with Maya to find out more…

How did the book come about? Was there a particular light bulb moment for you?

I was diagnosed with rheumatoid arthritis about five years ago and my own experience getting diagnosed was pretty easy and straightforward, I think in part because I had a pretty textbook case and an abrupt onset.

As I started learning more about autoimmune diseases, I started to question why these diseases – which are so common among women – seem to be really under researched, and why so many other patients didn’t have the experience I did getting diagnosed, and instead experienced long diagnostic delays, and often felt like their symptoms were dismissed.

As often happens, once you start looking for that issue you start seeing it everywhere! I had friends with mysterious health problems that were being dismissed as anxiety and depression. In my writing, I was seeing research pointing to these problems in various areas, and ultimately it seemed like, when you connected all of these dots, there was really a larger systemic problem here.

You talk in the book about a knowledge gap and a trust gap. How do they intersect and work together?

The knowledge gap refers to the general lack of knowledge we have about women’s bodies and symptoms, and conditions that disproportionately affect women. It’s, in part, a legacy of decades in which women were left out of a lot of clinical research. Researchers mainly just studied men and assumed that results could be extrapolated to women, without much regard for the possibility that there could be sex-gender differences.

There’s also a history of not prioritising research on conditions that disproportionately affect women. Things like fibromyalgia or chronic fatigue syndrome, and so many of these conditions that for decades were assumed to be all in your head, have really gotten very little research funding at all.

The result is that women are entering a medical system where even the very best doctors just aren’t equipped with as much knowledge about their health concerns.

The trust gap refers to this tendency to not believe women’s own self reports of their symptoms. In particular subjective symptoms like pain, fatigue or dizziness – anything that can’t be confirmed via objective tests or imaging. This relates to an even longer legacy of seeing women as hysterical and especially prone to psychogenic symptoms.

The way these two problems intersect really gets to the root of the problem. This knowledge gap and this trust gap are so mutually reinforcing – as long as we don’t know about women’s bodies, symptoms and conditions, they’re more likely to have unexplained symptoms, and we have this medical system in which unexplained symptoms tend to be normalised, dismissed or psychologised.

This creates a self-fulfilling prophecy where the knowledge gap continues to be perpetuated because medicine relies on this stereotype that women are hysterical to explain away all these unexplained symptoms they report.

How has the idea of the hysterical woman, and its impact on women’s health, changed over the centuries? And how does it continue to influence medicine today?

I think this was one of the most fascinating and shocking parts of my research. When I first started hearing stories from women who were dismissed, and told their symptoms were all in their head, I assumed it was rooted in a more general tendency to not take women’s voices as seriously as men’s. But, as I dug into the medical history more, I realised that tendency really has more specific roots within the concept of hysteria, which dates back centuries and centuries.

The word derives from the Greek word for uterus and, back in ancient Greek times, an array of symptoms would be blamed on a wandering womb. By the 16th and 17th centuries, as medicine started to have an understanding of the nervous system, hysteria was seen as a nervous disorder and women were seen as especially prone to it, because of their sensitive nerves. For centuries hysteria was seen as a real organic disease – but, after Freud, and after psychiatry started to become its own specialty, hysteria started to be seen as a mental disorder that causes physical symptoms.

Ever since then there’s been this diagnostic category of psychogenic illness that was called hysteria until fairly recently. Eventually that word fell out of favour as an actual diagnosis and you started getting new labels like ‘conversion disorders’ or ‘somatoform disorders’; these days ‘medically unexplained symptoms’ is often used.

It has really consistently served as a waste basket diagnosis, where any symptoms or conditions that are unexplained by current medical science can be thrown until they are.

The irony of course is that so many conditions have been pulled out of that waste basket over the centuries and decades, as medical knowledge has grown and we’ve made advances in medical technology. Yet, despite that history, there’s this tendency for every generation of medical practitioners to assume everything that’s currently unexplained is unexplainable, and by default is considered ‘all in your head’.

What did you find most shocking in your research?

I heard so many stories of women who were told that their own accounts of what was happening in their bodies was suspect. They weren’t believed, they weren’t trusted. But it’s easy to assume there’s a limit to that distrust – like maybe doctors will dismiss mild symptoms, but if you were truly really, really, really sick then your own self reports would be enough to get the help you need.

When I realised that women who are bedridden, who can’t walk, and often can’t speak, are still being told it’s all in their head, that was really the moment when I realised, oh no, there’s actually no limit to this. You can have the most functionally impaired patients ever and, if there aren’t objective biomarkers to confirm what’s going on with them, there will still be this tendency by many in the profession to say it doesn’t exist.

From a British perspective, I was also really struck by the scale of personal financial cost for women in the US who are struggling to get a diagnosis. 

Yeah, it really is mind blowing.  When we think about the way our for-profit health system and economic inequalities lead to disparities in health access and outcomes, we tend to think of differences in patients’ ability to pay for treatment. But actually, even getting a diagnosis costs a huge amount. Here in the US, if you go to one doctor and they can’t figure out what’s wrong, you have no choice but to try to find somebody else.

This creates a huge disparity between women who have the resources to keep searching for a diagnosis and those who don’t.

The book includes stories from women who went to literally dozens, hundreds of doctors before they were properly diagnosed. That’s a huge financial cost, but it’s also a huge cost in terms of time. So many women ultimately were diagnosed because of their own research – they self-diagnosed, or they did their own research to come up with a probable diagnosis, and then were able to find the experts they needed to get it verified. That also requires educational resources that a lot of women just don’t have.

One of the consequences of that divide is that, for a lot of conditions that are hugely disabling but not necessarily life-threatening, lower income women without those resources just don’t get diagnosed at all. For a lot of the conditions in the book, a lot of the patients who are being seen and treated by specialists, and who are involved in patient communities, are those more privileged women who had the resources needed to get diagnosed. And those who don’t are invisible to the medical system entirely.

How did your feminism, and your background in reproductive health, inform your approach to the book?

Once I became sick I realised that, as a healthy person, I had really focused on reproductive health because that felt like the most urgent women’s health issue at that time. Certainly I still believe that reproductive health is, of course, a very important issue – but I do think the feminist movement has given short shift to these problems that affect women when they are sick.

Feminism could use a more holistic understanding of gender bias and how it affects medical care outside of the reproductive health realm.

I ultimately made the decision not to cover reproductive health in the book and that was largely because – especially in the US, perhaps – the issues around reproductive health are so much informed by politics that we treat abortion care, and even birth control, as if it’s not even medical care. So to some extent I think it is different, but there are certainly ways that the knowledge gap and the trust gap play out in reproductive health.

One big area is in childbirth, and care during delivery and the postpartum period. The problem is just not listening to women, and I think Serena Williams’ experience really drove that home. Another area is the lack of super great birth control options.

If we really had a medical system that took women’s symptoms seriously, we would have a broader array of birth control options that didn’t bring such significant side effects for a lot of women.

There are certainly additional problems around reproductive health, but of course a lot of these issues are affecting women whenever they enter the medical system.

Who do you hope reads the book, and what would you like them to take away from it?

I really do hope all women who are patients or who will be patients – which is really all of us – will read it, as well as their loved ones. I was struck to find in my interviews for the book, and also talking to women after the book came out, that so many women do have these frustrating experiences of trying to find a diagnosis.

There’s a tendency to assume those experiences are a result of individual bad luck, or even to blame yourself and think, ‘maybe I should have advocated better for myself’, or ‘maybe it was just one bad apple’. It’s hard to see those experiences as reflective of larger systemic problems until you start seeing the patterns, and seeing how common these experiences are.

I hope the book can place these experiences in this larger context, and give some of the historical background and hard data, to help women realise that it’s not just you – and hopefully, in turn, feel empowered to push back more if and when they encounter healthcare providers who try to dismiss them.

I also really hope healthcare providers will read it. Doctors don’t get enough education on the history of their own profession. Medical professionals are taught that the knowledge they’re learning in medical school is just scientific fact. The fact that this knowledge has been created by human beings and institutions over decades and centuries, and has been skewed by historical inequalities and biases, is very invisible by the time it’s written down in a scientific textbook.

Just learning about this history, and how recently it is that we’ve even recognised this knowledge gap, will help imbue a much needed humility about medical knowledge, and a recognition that it’s not complete and probably never will be. It’s fine to tell patients, “medical science doesn’t know yet”, instead of reaching to that easy out of saying “it’s all in your head”.

You can find Maya online, and on Twitter.

Buy Doing Harm on Amazon.