Maya Dusenbery didn’t think much about the American health care system — until she was diagnosed with rheumatoid arthritis at age 27. Research into her own treatment led the St. Paul journalist to a far bigger story: a medical system she found to be rife with inequities in its diagnosis and treatment of men vs. women.
Dusenbery, editor of Feministing.com, found that far fewer dollars are expended on research for women’s health issues. There are fewer women involved in clinical trials. And even longer waiting times in the emergency room for the same symptoms (65 minutes for women, 49 minutes for men).
Now happily in remission, the 31-year-old Dusenbery is about to begin a coast-to-coast tour for her new book, “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick.” Before heading out, she talked about the myth of the “silent” disease; the history of “hysteria,” and the magical 154-pound man.
Q: You write about the egregious sexism in medical care. Many traditionally female diseases, for example, are dismissed as hypochondria or stress. What do you hope women take away from your book?
A: One of my hopes is that, for women who have had this experience, who have really felt dismissed and not taken seriously, that they’ll be able to see those problems as systemic, and not bad luck or their own fault for not advocating for themselves.
Even for people like me, who are highly educated and feel pretty assertive and empowered, it’s still very difficult to push back against a medical expert who is saying, “Nothing is wrong.”
Having knowledge and a better sense of the history will help empower women. There are limitations to medical knowledge. Women shouldn’t second-guess themselves when they’re being gaslit.
Q: I’m guessing that you hope doctors read this book, too.
A: I definitely hope that it will get into the hands of the medical community, who have the most power to change things. A lot of medical history is stuff that doctors don’t necessarily know, either. Just understanding mistakes of the past can help them have less arrogance and more humility.
Q: Your introduction to this work and, ultimately, to this book began personally with your diagnosis of rheumatoid arthritis. Did you initially think you would easily find the right medications and get back to some sort of normalcy stat?
A: I did sort of have that. I’m a journalist and a researcher. I thought, “I’m going to learn everything I can and fix this problem.” The diagnosis was pretty easy and I started conventional treatment pretty early, as well as alternative health approaches. But, despite how common autoimmune diseases are, the medical system appears to be remarkably bad at recognizing them.
As many as 50 million Americans suffer from autoimmune diseases, more than three-fourths of whom are women, but it takes about four years and four doctors to get the correct diagnosis. Nearly half reported that, before they were diagnosed, they were dismissed as “chronic complainers.”
I started connecting dots to women with heart disease, who were hesitating before seeking care out of fear of being called a hypochondriac. And women with Alzheimer’s disease and other conditions.
Q: This skepticism is age-old. You write about how, for centuries, Western medicine threw women’s “inexplicable symptoms” into the catchall diagnosis of hysteria.
A: The terminology has morphed from hysteria to “somatization,” which means the conversion of a mental state into physical systems, but the idea has remained remarkably unchanged. The stereotype that women’s symptoms are likely to be “all in their heads” has been hard-baked into medical knowledge.
Q: You also write about how clinical trials typically use only males, even male rats. Why is this dangerous?
A: Women demonstrate plentiful differences from men in everything from drug responses to risk factors for various diseases. Instead, clinical research has followed a one-size-fits-all model, and the one size is a 154-pound white male.
This has been improving since the early 1990s, when federal law began requiring women and racial minorities to be included in research funded by the National Institutes of Health [NIH]. But it takes 15 to 20 years for new scientific knowledge to go from bench to bedside.
Q: Heart disease is the number-one killer of women. Yet, symptoms are different for women and men. You suggest that can lead to medical neglect. How?
A: There’s not a full awareness of the differences in symptoms between the sexes. Also, there’s this tendency to brush off women’s symptoms as anxiety. The reason we don’t have that knowledge is that, for the first 35 years we studied heart disease, we used the male model. There really isn’t any excuse now.
And it’s not just heart disease that shows sex/gender differences in symptoms. We’re just beginning to understand those difference in a range of other conditions, including Alzheimer’s disease, which affects women disproportionately. That’s due, in part, to the fact that women live longer. But even controlling for that, women are at higher risk and have different clinical presentations than men.
Q: Your reporting on ovarian cancer is painful to read, because women have been ignored for so long and so many lives have been lost.
A: This is such a tragic and symbolic story. For a century, the myth was that ovarian cancer is a silent killer. There are no symptoms until it’s too late and, thus, it can’t be cured. Nothing changed until women survivors got together on the internet and started telling their stories in the media and had similar tales of symptoms and having reported those symptoms to doctors.
Even though there were tens of thousands of women talking among themselves, it wasn’t until 2007 that medical organizations officially put out a statement that ovarian cancer was no longer a silent killer, that here are the symptoms we should view as suspicious.
Q: Going forward, how do we advocate for ourselves? Get taken seriously?
A: Get a second opinion. Do your own research and seek out information in online patient communities. Take an advocate with you to doctors’ appointments, someone who can help you speak up. And tell your lawmakers to support greater NIH funding for women’s health issues.
Q: After writing this comprehensive book, are you optimistic that things are changing for the better?
A: I think I’m optimistic. More women than men are entering medical schools and women tend to bring new perspectives. Their priorities are perhaps different. More of them are likely to do research on gender disparities.
I’ve also heard from a lot of experts that many younger medical students — of both genders — are demanding this education and putting pressure on the system to give them the knowledge they need.
Q: How are you doing with your diagnosis?
A: I’m in remission, knock on wood.