TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. My guest became interested in women's health when her own health became a problem. A few years ago, when Maya Dusenbery was in her 20s, she started experiencing progressive pain in her joints. She was diagnosed with rheumatoid arthritis, an autoimmune disease. She's one of the lucky ones in the sense that she got an accurate diagnosis. Lots of people don't, but that's maybe especially true for women, who Dusenbery says are twice as likely as men to have chronic pain conditions.
Women are also more likely to have poorly understood diseases, or contested diseases as they are sometimes called, like fibromyalgia, chronic fatigue syndrome, and chronic Lyme disease. Dusenbery's new book, "Doing Harm," is about gender bias in the medical system and how women's symptoms are often dismissed or misdiagnosed. Dusenbery is also the executive editor of Feministing, a website of writing by young feminists about social, cultural and political issues.
Maya Dusenbery, welcome to FRESH AIR. So a few years ago, when you were 29, you were diagnosed with rheumatoid arthritis. What is it and what symptoms were you having that brought you to the doctor?
MAYA DUSENBERY: Yeah. Rheumatoid arthritis is an autoimmune disease where the immune system starts attacking the lining of the joints. And in my case, my symptoms began a couple of weeks after I had a really bad bout of the flu. I just woke up one morning, and my knuckles and my hands were stiff and painful for the first couple hours after waking up. And then sort of over the course of two or three months, that spread from my hands to my ankles and toes and then knees and eventually shoulders and elbows as well. It's a very painful disease because the immune system is causing inflammation and is kind of swelling, and I was very lucky that I got treated quickly. So my symptoms have actually been in remission for many years now.
GROSS: So you got an accurate diagnosis pretty quickly. So how did that lead to this book about gender bias in medicine?
DUSENBERY: Yeah. I wanted to sort of understand what was happening to my own body, and as I learned more about autoimmune diseases was very struck by the fact that they are very common. You know, they affect 50 million people in the United States, it's estimated, and three-quarters of those people are women. And most surprisingly to me I was starting to hear stories of other patients who did not have that easy time getting diagnosed that I did and really had experienced very long diagnostic delays and felt, during that time, that they were seeing multiple doctors over multiple years, that their symptoms were not taken seriously or they were dismissed as stress or just otherwise sort of minimized. And, yeah, as a feminist, I sort of suspected that there might be something to the fact that three-quarters of people with autoimmune diseases are women.
GROSS: So medical understanding of autoimmune diseases is still relatively new, right? I think you said, like, there's only been about 50 years that there's been something described as an autoimmune disease. So do you think for many years before medical understanding of autoimmune disease reached the point that it's at now - and there's still a lot doctors don't know about it - that women were especially dismissed who had the kind of cluster of pain symptoms now associated with autoimmune disease?
DUSENBERY: Autoimmune diseases, since they affect a range of different parts of the body, have very diverse symptoms. But one of the most common ones that really is common kind of across all of them is fatigue - a really sort of deep, deep fatigue that isn't, like, just, you know, being sleep deprived from staying up too late. And, you know, that fatigue - comparable to pain - is really, you know, this very subjective symptom that's hard to sort of communicate to other people.
And I think that women are up against this real distrust of their own reports of their symptoms. And so conditions like autoimmune diseases that really are sort of marked by these subjective symptoms of pain and fatigue I think are very easy to dismiss in women when you just - you know, if you're not believing a woman who - when she says, you know, I'm - no, I'm really just, like, functionally incapacitated by this fatigue. It's - you know, it's not normal. And that still happens, you know? And even though we do know about autoimmune diseases, during that diagnostic delay women are often told that, you know, you're just stressed or tired and have a really hard time kind of convincing doctors that this fatigue is abnormal.
GROSS: You write about women you know who've taken men with them - a relative, a friend - to the doctor to kind of vouch for them.
DUSENBERY: Yeah. I found this just really one of the most disturbing things that I found in my research, how many women reported that, as they were kind of fighting to get their symptoms taken seriously, you know, just sort of sense that what they really needed was somebody to sort of testify to their symptoms, to testify to their sanity and felt that bringing a partner or father or even a son would be helpful and then found that it was, that they sort of were treated differently when there was that man in the room who was, you know, corroborating their reports.
GROSS: So one of the areas that there are actual gender differences in how the problem can present is in heart attacks. You write about how women are often in the middle of a heart attack in the emergency room and they're sent home. How are the symptoms different for some women's heart attacks than men's?
DUSENBERY: Yeah. So heart disease is probably the area where there has been the most research into these gender differences, you know, which isn't to say that it's, you know, the only disease that has these differences. I think that - there's been a recognition that sort of the for the first 35 years we were studying heart disease, we were really mostly studying it in men. And so there's been a concerted effort to kind of go back and compare women's experiences to men's, which has led to the knowledge that women are more likely to have what are considered atypical symptoms, which, you know, the only reason they're considered atypical is because the norm has been this male model. So atypical symptoms like pain in the neck or shoulder, nausea, fatigue, lightheadedness - and women are more likely than men to actually not experience any chest pain at all, which, of course, can be a huge barrier to getting diagnosed accurately.
And partly as a result of those differences in symptoms, which are some - still not sort of always recognized by health care providers - women, especially younger women, are more likely to be turned away when they're having a heart attack - sent home. One study found women under 55 were seven times more likely than the average patient to be sent home mid-heart attack. And you also see - you know, even if they're not sent home, you see longer delays to getting, like, EKGs and other sort of diagnostic testing or interventions in the ER setting.
GROSS: So you write about how women have been left out of medical research for a long time and that's affected how accurately women are diagnosed. That's also affected what kind of dosage of medication they're taking because they weren't included in the studies of medication. So why were women left out of these studies for so many years?
DUSENBERY: Well, one of the big reasons was that there was a lot of concern about including women in drugs trials specifically because of concerns about affecting their hypothetical fetuses. So in the '70s, the FDA actually had a policy of prohibiting any women of childbearing age from participating in early-stage drug trials, and there was a sort of general hesitancy about including them in any clinical drug trials. So I think that was a big factor. But we also see that, at that time, women were also excluded from studies that were just observational studies, not, you know, drug trials. You know, the - in the '90s, when there were congressional hearings about this problem, the public learned that women had been left out of things like the - a big observational study looking at normal human aging that was ongoing for 20 years. It started in, I think, the '50s, and for the first 20 years, women had been left out of that.
A lot of the really foundational research on heart disease and looking at risk factors and the study that concluded that taking daily aspirin can reduce the risk of heart disease - that was done on about 22,000 men and zero women. And for those kind of things, you know, I think the reason was researchers believe that women were too different from men and also sort of too different from each other. So women who were postmenopausal versus premenopausal or pregnant or postpartum, you know, women have differing hormone levels according to where they are in their menstrual cycle. And all of this was kind of just seen as too complicated to account for. And so it just seemed sort of easier to study men and get cleaner results that way and then just sort of extrapolate the results to women. So, you know, which, of course, is ridiculous because the very sort of reason for excluding women is then the very reason that they need to be included, you know, that their differing hormone levels might actually make a difference. But researchers kind of decided that they would just ignore that fact or turn a blind eye to that.
GROSS: In a way, I mean, you know, I could see why researchers or the FDA would be reluctant to include women of childbearing age in medical research studies because we've seen some things go really wrong with certain drugs, like DES and thalidomide, that lead to deformities in the babies they were carrying or lead to cancer in later years. So where is the medical profession on that now?
DUSENBERY: In 1993, Congress passed a law saying that women need to be included in NIH-funded clinical research. And in the aggregate, women do make up a majority actually now of subjects in NIH research. However, we still don't know that women are necessarily adequately represented in all areas of research because the NIH just sort of looks at the aggregate numbers. And the outside analyses that have been done show that women are still a little bit under represented. More importantly, even though women are usually included in most studies today, it's still not the norm to really analyze results by gender to actually see if there are differences between men and women.
So experts have described this to me as a sort of add-women-and-stir approach where women are included but we're still not getting the knowledge we need about ways that their symptoms or responses to treatment might differ from men. The other big problem is that that federal law only applies to clinical research with humans. And over the past 20 years, it's been an ongoing problem to get preclinical researchers, so researchers who are doing studies on animals or with cell lines, to pay attention to sex differences. It's still firmly the norm to just use male rats. And it's really only in the last few years that the NIH has kind of started to tackle that problem and now, you know, really urges preclinical researchers to pay attention to these potential sex differences.
GROSS: So let's take this to a practical level. Like, if say pharmaceutical studies are done mostly on men, say men of average size, and you're a woman who's small, would the dose that you'd be taking be different than the dose that was tested on men of average size?
DUSENBERY: Yeah, definitely. So there are a lot of factors that go into these recognized sex differences in drug metabolism and response. And so percentage of body fat affects it, hormones, different levels of enzymes. All of these things go into it. But really the probably the most sort of straight forward is that on average, men have a higher body weight than women. And yet, even that difference is not usually accounted for. You know, we prescribe drugs based on this one-size-fits-all dosage, which ends up meaning that on average, women are sort of being overdosed on most drugs.
GROSS: Well, I'll tell you what, let's take a short break here and then we'll talk some more. If you're just joining us, my guest is Maya Dusenbery, author of the new book "Doing Harm" about gender bias in medicine and research. She's also the executive editor of the website Feministing. We'll be right back. This is FRESH AIR.
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GROSS: This is FRESH AIR. And if you're just joining us, my guest is Maya Dusenbery, author of the new book "Doing Harm" about gender bias in medicine. And it's about how women are often misdiagnosed or their symptoms are dismissed. And she's also the executive director of the website Feministing, which has feminist analysis of social, political and cultural issues. There's a category of illness now that's described as a contested disease. And I think that women are more prone to these, quote, "contested diseases" than men.
What are they? What are those diseases or syndromes?
DUSENBERY: Yeah, so contested diseases would include things like chronic fatigue syndrome, fibromyalgia, chronic Lyme, multiple chemical sensitivity, which is now known as chemical intolerance. And all of these conditions disproportionately affect women. And this sort of contest is between the medical establishment that has historically insisted that these conditions are basically all in your head, that they're psychogenic, and the people who are actually affected by them, who very strongly consider them physical conditions.
And there's now a growing recognition among the medical community that we should treat these as sort of poorly understood diseases that we don't know that much about in large part because we have not studied them. And what's happened is that these conditions have been caught in this catch 22 where because they affect women and we have this longstanding stereotype that women are prone to hysteria, the medical community has just assumed that they must be psychosomatic and so has devoted very, very little research funding and effort into studying them.
But, of course, funding that actual scientific research is the only thing that would prove that they're real diseases. And so it's created this sort of vicious cycle that I think we're just now kind of getting out of.
GROSS: So in spite of the fact that women endure childbirth, which can be incredibly painful, I think women are assumed to be - or at least often assumed to be - more sensitive to pain, that they don't handle pain as well as men, that therefore they complain more, that they bring more medical symptoms to doctors. You write about how it's hard for some women to figure out what to do because of this. If they tell the doctor how much pain they're in, they might be seen as hysterical. If they try to underplay the amount of pain they're in, that leads to another problem. Can you describe this situation that a lot of women feel that they're in?
DUSENBERY: Yeah. So I think women are sort of expected to have this overly emotional response to pain. That's sort of the stereotype. And then the other stereotype is that men are sort of expected to be stoic and keep a stiff upper lip. And so what happens is that if women sort of play into that stereotype by being emotional and - they're often dismissed as just hysterical. But if they go the opposite route and try to be really stoic - and a lot of women do report feeling a real pressure to do that, they feel like they have to be anti-hysterical to the point of actually underreporting their pain. But, of course, right, that does not necessarily help them either because then they are underreporting it, and that's not a good strategy if the goal is to get doctors to take your pain seriously.
GROSS: Right. If you're not in a lot of pain, why are you here?
GROSS: In your book, you tell a lot of stories about women who were misdiagnosed or were - who were sent home saying, like, well, there's really nothing wrong. Why do you think it's important to tell those stories?
DUSENBERY: Yeah. I think it's so powerful for women to start kind of talking about these experiences because what I sort of didn't realize before I did all this research is that I think there is a lot of silence around these experiences. I think that women tend to sort of internalize that dismissal by a doctor or they assume that it's just bad luck or they think that, you know, they could have done something to advocate for themselves better. And so I think that the silence about this issue, that really prevents women from seeing how common these experiences really are.
And I think when you start talking about these really frustrating, disrespectful experiences in the medical system, women see that they're not alone, that it's not just them, that they share these experience with a lot of other women. One of the big reasons this problem is so entrenched is that health care providers aren't getting feedback on their diagnostic errors. They don't sort of see this as a problem yet. And I think that a sort of storytelling about this can really be powerful in just sort of putting it on the radar and exposing the extent of the problem.
GROSS: Maya Dusenbery, thank you so much for talking with us.
DUSENBERY: Thank you so much for having me.
GROSS: Maya Dusenbery is the executive editor of the website Feministing and author of the new book "Doing Harm." After we take a short break, Maureen Corrigan will review a new book by Jan Morris, who is famous for her works about travel and history and for her 1974 memoir about being a transgender woman. We'll also hear my 1989 interview with Jan Morris. And we'll hear my interview with bass player and composer Buell Neidlinger, who died earlier this month. I'm Terry Gross, and this is FRESH AIR.
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