Episode 7: Women & MCS with Maya Dusenbery

Aaron Goodman  00:05

Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with Multiple Chemical Sensitivity or MCS, also known as Environmental Illness, Chemical Intolerance and Toxic Induced Loss of Tolerance or TILT. The podcast also highlights emerging research about the illness. 

Aaron Goodman  00:24

This episode features an in depth conversation with Maya Dusenbery. Maya is a journalist, editor and author of "Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick." 

Aaron Goodman  00:40

A New York Times Editor's Choice pick, "Doing Harm" as the winner of the 2019 Minnesota Book Award for general nonfiction, and was named one of the best books of 2018 by NPR, formerly the editorial director of the feminist blog feministsting.com. 

Aaron Goodman  00:57

Maya has written for publications including the New York Times Magazine, Scientific American, Slate, Mother Jones and Pacific Standard. She regularly speaks about gender bias in medicine to students, health care providers, patient advocates, and researchers. 

Aaron Goodman  01:13

In our conversation Maya shares her knowledge about why so many women with chronic illness including MCS are dismissed and misdiagnosed. We also talk about the problematic notion of the hysterical woman, a term commonly used in the medical profession to describe women with illnesses that are not yet fully understood. How women's knowledge is a source of power and about coming together in online spaces and supporting one another. 

Aaron Goodman  01:41

Women are making their voices heard and calling on clinicians to provide better care. I hope you enjoy the conversation. We release new episodes twice a month. The best way to never miss one is to subscribe for free wherever you get your podcasts. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. And thanks so much for listening. 

Aaron Goodman  02:05

Maya Dusenbery, thanks so much for joining me on the podcast. 

Maya Dusenbery  02:08

Thanks for inviting me,

Aaron Goodman  02:09

You write about the misdiagnosis and dismissal of women with a full range of medical conditions. A lot of people who are listening, women and men, will have had this experience. What kind of effects does this have on a person?

Maya Dusenbery  02:24

I've found in my interviewing of women that there are so many effects from this dismissal that go beyond just the kind of, most obvious thing is that this can often lead to very long diagnostic delays. 

Maya Dusenbery  02:39

Depending on the condition that can mean a lot of frustration, multiple doctor's visits over months or years. But you know, for more life threatening conditions, obviously, that kind of delay can be a matter of life or death or really affect the prognosis. 

Maya Dusenbery  02:54

But beyond those kind of concrete outcomes, I think there is a really insidious kind of psychological effect from being dismissed by anybody, but especially, a medical professional who's in this position of authority. 

Maya Dusenbery  03:08

I think a lot of the women that I interviewed talked about how that led to them sort of distrusting their own knowledge of their body. I think it's easy for even the most kind of empowered and educated patient to start to internalize that dismissal and start thinking, you know, well, maybe I am making too big a deal out of this. Maybe this is just stress. 

Maya Dusenbery  03:33

And in the worst case scenario, I think that can lead to people just giving up and just living with these conditions. And it was often in my interviews it came out that a lot of times it really took hearing other women's experiences for patients to kind of see that, this isn't just me, this isn't an individual problem this as part of a systemic problem. And it wasn't just kind of bad luck, or one bad apple that led to this dismissal.

Aaron Goodman  04:01

May I ask, what was your entry point, the spark for you to take on this really enormous project? What led you to want to do that?

Maya Dusenbery  04:10

Yeah, so I was, you know, had been a feminist writer for years and had written about women's reproductive health. But it wasn't really until I was diagnosed myself with Rheumatoid Arthritis, when I was 27. 

Maya Dusenbery  04:23

Before then I had been very healthy so hadn't really had many interactions with the medical system and really hadn't given much thought to how well equipped it was to care for me if I were actually sick. 

Maya Dusenbery  04:35

And my own experience was quite straightforward. I actually, you know, got diagnosed pretty quickly, started treatment early and have been in remission for years, but that experience definitely inspired me to learn a lot more about autoimmune diseases which disproportionately impact women, and learn a lot about other autoimmune patients experiences getting diagnosed and learn that I was actually really pretty lucky to be diagnosed within a few months. 

Maya Dusenbery  04:59

A lot of autoimmune patients see many doctors over many years. And so yeah, the book was sort of an attempt to kind of understand what are the systemic problems in medicine that mean that so many women do have experiences like that

Aaron Goodman  05:13

In the book, you go into depth about a whole range of illnesses and this broad category, which you and others refer to as contested illnesses. And I wanted to ask, how do you view this term? Because it's a term that often is used in the media when referring to Multiple Chemical Sensitivity? How do you view this umbrella term 'contested illness'?

Maya Dusenbery  05:37

You know, it feels like, I mean, the contest, you know, that is referred to is kind of this contest between the patient's own understanding of what's happening, and the medical establishments. 

Maya Dusenbery  05:50

And I think it's a term that really does accurately reflect the problem to some extent, that there is in these kind of conditions, a lot of times conflict between--between patients and doctors, in how to understand them, how to treat them. 

Maya Dusenbery  06:07

But yeah, I think it, it shouldn't be that way. The patient's voices should not be considered sort of a challenge to medical authority. There should be a sort of sense that patients and doctors and researchers are coming together to figure out what's going on in these conditions that really are just poorly understood, because we haven't studied them very much at all and have really neglected them.

Aaron Goodman  06:32

When you write about contested illnesses, you write about ME/CFS, Chronic Fatigue Syndrome and Lyme Disease. And I wonder if these conditions share similarities with Multiple Chemical Sensitivity in terms of the experience of women who go to seek medical support? 

Maya Dusenbery  06:52

Yeah, absolutely. I mean, in all those cases, they're medically unexplained syndromes, so symptoms that we don't understand fully the physiological underpinnings. 

Maya Dusenbery  07:05

And so there's been this long history of assuming that in that case, it means that they must be psychiatric. And so yeah, ME/CFS, Chronic Lyme, Multiple Chemical Sensitivity, all kind of share a similar history, in that that's been the sort of default explanation for these conditions. 

Maya Dusenbery  07:30

And then, you know, to varying degrees, that kind of effort by patients and activists to challenge that and say, you know, we should be investing in biomedical research to understand what's going on. 

Maya Dusenbery  07:43

And the thing that I point out in my chapter on those three illnesses is that in all cases, the fact that women are disproportionately affected by them has been sort of pointed to as part of the reason that we can assume that yes, they must be psychosomatic because we all know that women are prone to hysteria. 

Maya Dusenbery  08:03

And so that's kind of used as evidence that that theory of the condition is accurate. So yeah, there were, I think, a lot of parallels in both the patient experience and the kind of his--history of those conditions.

Aaron Goodman  08:19

And I'd like to invite you in a moment to talk in greater depth if you're open to it about this history of labeling women as hysterical. But I wanted just to ask about, when it comes to other so called contested illnesses, such as Lyme Disease. 

Aaron Goodman  08:33

Has there been a progression because of advancements in the science around Lyme Disease, for example, that has led to a shift in terms of the response from medical professionals? And do you think people with MCS can have any hope that in time, there will be a similar shift?

Maya Dusenbery  08:53

Yeah, I definitely think so, to a degree. Yeah, there's certainly now the--the CDC recognizes post treatment Lyme Disease Syndrome as a condition that affects 10 to 20% of patients who've been infected with Lyme. 

Maya Dusenbery  09:09

And there are concerted efforts to study that and find out what's going on in those patients, including studies that are open to the possibility that the cause is persistent infection by the bacteria. 

Maya Dusenbery  09:25

And so yeah, I think that science has definitely helped move things along. I don't know exactly how much that translates into patients being taken more seriously in the real world. In the doctor's office, there's always that sort of lag between what's happening on the kind of cutting edge of research that you know, if you're a really informed patient, you can find great researchers doing this kind of work, but I don't know that the average patient who's seeing a family doctor for Lyme and then is still having no symptoms is going to, necessarily, yeah, may still be met with--with some skepticism. 

Maya Dusenbery  09:25

And you know, it has become such a controversial thing that has really divided the medical community. But I do think yeah, there's--I think it does provide a good example of how, what we need is science that helps change things. And I think I'm also optimistic that, as you know, we do more research on long COVID. That that is another area where I think there's kind of spillover effects where as we recognize that patients with the Coronavirus, some of them continue to have lingering symptoms that kind of will open up science to understanding that post infectious illnesses with other viruses or pathogens, have been sort of long neglected and should be researched as well.

Aaron Goodman  10:52

Thank you very much. It'd be interesting to hear you just unpack the--the notion of the hysterical woman a little bit, please.

Maya Dusenbery  10:59

Yeah, yeah. So you know, I think when I first started hearing stories like that of women being dismissed in those ways, I thought it was just yet another realm where women's voices aren't granted quite the same authority as men's are. But as I kind of got deeper into the research, I realized that there is this very long history within Western medicine, that kind of explains why women's reports of their symptoms are so often distrusted like that. 

Maya Dusenbery  11:25

And so the concept of hysteria, really dates back centuries, if not millennia, in ancient Greek medicine, you know, a kind of range of symptoms would be blamed on a wandering womb that was supposedly roving about the body. 

Maya Dusenbery  11:39

Later on in the 17th and 18th centuries, hysteria was seen as a nervous system disorder that women were especially prone to because of their sensitive nerves. And then after Freud came along, there was kind of this pretty major shift where for centuries, hysteria had been a physical disease that mostly impacted women. 

Maya Dusenbery  11:58

But then it came to be seen as this psychological condition that caused physical symptoms. And really, ever since then, medicine has kind of retained this diagnostic category of psychogenic illness that really allows it to, when faced with symptoms that aren't readily explained medically, kind of by default, say, you know, it must be the patient's unconscious mind. 

Maya Dusenbery  12:22

And that, you know, I think affects a lot of patients, regardless of gender, but I think has impacted women especially just because they've sort of been seen as the typical patient with hysterical symptoms for so long. 

Maya Dusenbery  12:34

And the reality is that women do have more, quote unquote, medically unexplained symptoms compared to men, which I would argue is just because they've been under studied, and we haven't kind of devoted--Women have been left out of a lot of clinical research for decades, and their conditions have been neglected in the research realm. 

Maya Dusenbery  12:53

And so there's a sort of, you know, mutually reinforcing dynamic that happens, where, you know, the less we know about women's bodies and symptoms, the more medicine kind of reaches for this explanation that well, you know, that's just because women are hysterical. And that sort of in turn kind of just perpetuates that problem.

Aaron Goodman  13:12

Very interesting. So how about we talk a little bit specifically about Multiple Chemical Sensitivity in this context, the wider discussion of dismissal and misdiagnosis of women and in your book, for example, you write, in the mid 80s, researchers started to do a lot of work around Chemical Sensitivity. And there was a prominent researcher named Dr. Theron Randall, who studied the impacts of chemicals on people who were chemically intolerant, and he coined the term clinical ecologist and then you write that allergists dismissed him and they called his work junk science. 

Aaron Goodman  13:51

You quote Dr. Claudia Miller, who's done a lot of work around MCS, she writes that "they had been previously treated and told they were practicing witchcraft or voodoo medicine because allergists injected patients with tiny amounts of the same substances to which they reacted." 

Aaron Goodman  14:09

And so you have this whole class of physicians--of allergists who are outright dismissing the very important preliminary work around MCS in the 1980s because they themselves had been dismissed.

Maya Dusenbery  14:24

Yeah, that was a really interesting kind of--kind of insider baseball history of the professional tensions there. But yeah, it seemed like, it was like allergy itself had been relatively newly kind of recognized. 

Maya Dusenbery  14:38

And here was this form of intolerance that wasn't an allergy in the classical sense. And there was a sort of professional need to kind of defend against any sort of dismissal from--from the rest of the community. You just say, well, we're not going there because we want to stick to what the science clearly shows which then just goes back to the problem that science is always changing. 

Maya Dusenbery  15:06

And this was if you're so resistant to anything that hasn't fully been proven or understood yet, you aren't going to do the science needed to get there.

Aaron Goodman  15:18

Right. And then building on this, Claudia Miller writes that "even in medical school young doctors-to-be were taught that the more symptoms a patient reports, the more likely the diagnosis should be a psychological one."

Aaron Goodman  15:32

And we know with Multiple Chemical Sensitivity, it affects a lot of bodily symptoms. So it's not uncommon for people to report many different symptoms. And so doctors are trained to respond to that with diagnosis of anxiety or mental illness, psychological disorder.

Maya Dusenbery  15:51

Yeah. And I mean, I think that's such a huge problem for really a range of conditions. Because, you know, it's any kind of systemic condition that is affecting multiple parts of the body and multiple bodily systems.

Maya Dusenbery  16:04

I think it's hard for medicine to deal with in general, because of the way we've divided up specialties by organ. It's a lot of even, autoimmune diseases that are affecting multiple conditions kind of fall through the cracks because of that, and then when you have something that isn't yet understood, and doesn't have biomarkers yet, there is this kind of, as Claudia Miller says, like explicitly kind of taught and implicitly taught that, you know, Somatic symptom disorder causes all of these kind of unintelligible symptoms. And yeah, that means that basically, any unexplained condition that's really systemic is going to be kind of viewed in that way.

Aaron Goodman  16:48

And then as we move through the 90s, MCS was referred to in medical literature as a condition primarily affecting well off women. It was referred to as quote unquote, 'Yuppie Flu'. 

Aaron Goodman  17:02

And you write, dismissed as we've talked about, along with other so called contested illnesses like Lyme Disease, and ME/CFS, as quote, "a fashionable diagnosis for stressed out hypochondriacs."

Aaron Goodman  17:18

And then you write, "In 1994, that one doctor stated about MCS, that it's a belief not a disease. It's a culturally acquired anxiety disorder without a known cause." 

Aaron Goodman  17:34

And that you write, "women were accused of latching on to chemicals as the reason for their "ill defined suffering."

Aaron Goodman  17:44

And even women who got Chemical Sensitivity or Chemical Intolerance from working in sick buildings, you quote Professor Michelle Murphy, that "they were told they had chemical phobias and hysterical paralysis."

Aaron Goodman  18:00

 And you also write that "the media was blamed for creating irrational fears about toxins in our everyday environment, instead of medical professionals and more researchers taking women's health and claim's seriously."

Maya Dusenbery  18:15

Yeah, and I think another way that MCS and Chronic Lyme and Chronic Fatigue Syndrome are, sort of have this very similar history where this idea that these are like fashionable diagnoses, that patients who are really just psychologically suffering, sort of latch on to this condition to have their symptoms be seen as more legitimate. 

Maya Dusenbery  18:41

And that the media was in all those cases sort of blamed for exacerbating that simply by covering it. So you know, when Lyme was kind of emerging, there was this idea that if the media would stop writing articles about this growing epidemic, then patients would not be sort of like self identifying as having Lyme. 

Maya Dusenbery  19:03

And similarly with Chemical Sensitivity. And of course, as I point out in the book, the ridiculousness of that is that Lyme was growing. And the number of chemicals in our daily environments was actually increasing. And so there's the way that the blame is shifted from the actual danger to the  patient's fear of those things being seen as the problem, is really similar in both cases.

Aaron Goodman  19:33

Very troubling. Could we talk for a little bit about the roots of the problem and you--you write about the exclusion of women, and particularly women of color, from the field of medicine. 

Aaron Goodman  19:44

And you write that "this certainly can have an impact on the systemic way women are dismissed and misdiagnosed." And in the United States, you write that "specific laws barred women and women of color from medicine and that for a lot of women, particularly women of color, women of immigrants, Latina and others, to this day face a whole host of barriers to accessing health care."

Aaron Goodman  19:45

And even in the field of medicine itself, more and more women are going to medical school. And there is greater female representation in certain disciplines in medicine such as there are more female pediatricians, but men still hold the majority of positions in emergency medicine, neurology, anesthesiology, cardiology, urology, orthopedic medicine, so it's quite a long list. 

Aaron Goodman  20:37

And even at universities in academia, more women are being hired, but men still hold positions of authority as full professors, department chairs and deans, and there's less medical research funding for women than men.

Maya Dusenbery  20:52

There's sort of various layers to the problem. I think yes, medicine is still really a male dominated profession, even though a lot has changed in you know, a relatively short amount of time, at this point. Now, there are about equal numbers of men and women in medical schools. 

Maya Dusenbery  21:08

But yeah, as I point out in the book that still hasn't really translated to full equal power for men and women within the profession. And still the case that men are in positions of power, and importantly, are sort of in the positions of power that are kind of dictating what's actually being taught in medical schools to future doctors. 

Maya Dusenbery  21:29

And so yeah, I think that maybe even more than the sort of lack of women being fully represented in the profession is that because of this historical gender bias in the profession, women have been under studied and until the early 90s, were underrepresented in clinical research. 

Maya Dusenbery  21:51

At that point in the 80s, the FDA actually had a policy excluding all women of childbearing potential from taking part in early phase drug trials. And so even though there's been efforts over the last few decades to ensure that women are equally represented, and that we're designing our studies in such a way that we can tell if there are any differences between men and women, there's still this real knowledge gap when it comes to women's health, that we for decades, we're sort of acting as though any research done on men could just be extrapolated to women. 

Maya Dusenbery  22:23

And only kind of late in the game realize that's actually not the case, that there are often differences. And so even though it may feel like you're going to see a female doctor as your primary care physician, even the very best doctors just aren't equipped with as much knowledge about women's bodies and symptoms as they have about men because of this way that the medical knowledge base itself has been kind of skewed towards knowing more about men.

Aaron Goodman  22:48

Yeah. And we know that the majority of people with Chemical Sensitivity are women. And so it makes sense that this is one of those illnesses that is less studied, because mostly women have it. 

Aaron Goodman  23:03

And you have a chapter where you write about women as a source of knowledge. And I wanted to invite you to talk a little bit about this notion about how you understand women as a source of knowledge. 

Aaron Goodman  23:15

And when women go to healthcare providers, and are dismissed and told, either in subtle ways, or explicit ways that they have anxiety disorder, or they're misdiagnosed as having a mental illness, do you have any suggestions for them? 

Aaron Goodman  23:30

Because it can be very discouraging and difficult, if not traumatizing to deal with that. But we know that women have such a huge contribution to make, and that women do hold the knowledge. What would you suggest for women as they navigate these challenges?

Maya Dusenbery  23:47

Yeah, I mean, I think it's so important for women to be aware. I mean, for every patient to be aware of these problems within medicine, you know, the fact that women have been under studied and that there's a reason that certain conditions have been neglected, and we don't know a lot about them. 

Maya Dusenbery  24:05

And so my hope is that being kind of empowered with that information, and history, helps patients feel more empowered to really push back if they're being dismissed, or find another doctor and keep getting a second opinion, or a seventh opinion, or as many as it takes to at least find somebody who believes your symptoms, even if you have a condition that is not yet really understood. 

Maya Dusenbery  24:28

So there's not a lot that doctors can necessarily do that everybody does deserve to have at least that kind of basic belief and validation of their--their symptoms. And as we said at the beginning, you know, we shouldn't underestimate that it can be really difficult to trust yourself when that doctor is saying, you know, nothing's wrong or you're--it's just anxiety. 

Maya Dusenbery  24:50

And I think one of the ways that a lot of women find that sense of kind of empowerment is through going online to online support groups and connecting with other patients. And yeah, realizing that in those patient communities, there is so much knowledge, you know, collective knowledge from patients who have been really marginalized from mainstream medicine, but yet, in part because of that, have built up really robust kind of peer to peer health sharing, which was so inspiring for me in a number of conditions to see how much patients have been able to do for themselves and for each other. 

Maya Dusenbery  25:28

And yeah, I do think it's such a shame that medicine hasn't kind of tapped in to that patient knowledge as much as it should be to understanding what's going on. And, you know, I think we're seeing this with again. Long COVID is such a great kind of example of how this can happen really quickly. And when the conditions are right, that the patients themselves are the ones who said, this is a thing, this is a thing that's happening, you need to be paying attention and devoting research to it. 

Maya Dusenbery  25:59

And I do hope that that experience for all of us can kind of provide a example for how, you know, we should really be doing this for all these really neglected conditions that have been understudied for decades now.

Aaron Goodman  26:12

Well Maya, it's been really fascinating to hear you. Would you like to add anything else?

Maya Dusenbery  26:17

I am often asked what patients can kind of do to better navigate the system. And I do always try to balance kind of advice for individuals with a reminder that this is really a systemic problem. 

Maya Dusenbery  26:31

And I want more patients to feel empowered and to do their own research and feel like they're informed. But also, we need to remember that, you know, not all patients can do that and they shouldn't have to do that. 

Maya Dusenbery  26:45

We should have a system where you don't have to be super empowered to get good medical care. And we should have providers who have the knowledge they need and--and the humility about what they don't know, to make the system better for everybody.

Aaron Goodman  27:00

I think that's a really important word that you just shared, that humility. So Maya, thank you so much for everything you shared and for your incredible book. I'm sure it's been beneficial for thousands, if not more readers, and I think for the community of folks with Multiple Chemical Sensitivity, it will also be--I'm sure many have read it, but for those who haven't, I'm sure it will be extremely valuable. So thank you again for taking time to share your knowledge with us.

Maya Dusenbery  27:29

You're welcome. Thanks for having me.

Aaron Goodman  27:32

That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Maya Dusenbery for taking time to speak with me.

Aaron Goodman  27:41

 The podcast is produced by me, Aaron Goodman, Dani Penaloza and Emma Bolzner. Please subscribe to the podcast to never miss an episode, wherever you get your podcasts. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. Follow us on social media. Just search for the Chemical Sensitivity Podcast or PodcastingMCS.

Aaron Goodman  28:04

If there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let me know. Email me at info@chemicalsensitivitypodcast.org, and thanks so much for listening.