good evening and welcome to come and good books. we are very happy to welcome mrs. dugan barry. she is presenting her new book doing good, she is a fellow at mother jones magazine and a columnist for pacific magazine. before coming a journalist, she worked at the national institute for reproductive health and she is a minnesota native and currently based in the twin cities. please help me welcome my ad dugan barry. [applause] >> thank you. how does this sound? about that?

like this? really? testing, testing. how's this? how about the. hello, hi, i'm mia, i'm happy to be here in the home town where i grew up. i thought i would speak a little bit about the book and how i got interested in this topic, and do a short reading before opening it up for questions. i've been here for almost a decade and i've always written a lot about issues in that capacity, but it really wasn't until five years ago when i got rheumatoid arthritis that

i started thinking about the medical system and how sexism was playing out in it more broadly than just reproductive health issues. i started learning a lot about autoimmune diseases which disproportionately affect women in effect, people in the united states. it's estimated to affect 60 million people in the u.s. i was sort of confused about why this epidemic didn't seem to be on the public's radar and also started to realize it was off of the medical system's radar as well. i actually had a pretty good experience getting diagnosed, i got diagnosed pretty quickly and started treatment, but i started learning that a lot of autoimmune patient experiences really long diagnostic glaze and go to for doctors over four years before their properly diagnosed. during that time, a lot of

them report feeling their systems are really dismissed and not taken seriously and written out and stressed out hypochondriacs. that was sort of my entry point into thinking about these issue issues, and as often happens, once you start asking people about their expenses, you start being a collector of stories that are very similar i started hearing other stories of women who had a range of conditions and felt the same, that their symptoms were minimized or normalized and sometimes disbelieved entirely. the book tries to dig into why that is and makes the case that there are sort of two big systemic problems that have become entwined and i really affecting the quality of care that one receives. the first being just the lack

of knowledge about women's health and their bodies and symptoms, and this was really first put on the radar in the early '90s, which seems like a long time ago to me because i was too young to remember it, but at that time there were congressional hearings on this problem, advocates pointed out that women were really underrepresented in clinical research. : : :

including a federal law that requires women were included in federally funded research. but i was surprised to sort of learn how little it's changed and sort of how slow was started in that. in the early 90s, a lot of sort of new scientific knowledge has emerged as women became included in studies and there is greater funding for conditions that disproportionately affect them, but i sort of have this impression that the medical done, you know, i'm a scientific cutting-edge, this new knowledge should be incorporated immediately into medical education and nothing can sort of be further from the true. these are just very slow moving and petition and so a lot of

that knowledge has just not yet sort of at play in clinical medicine so i think we are now seeing the slack time that we've been slowly trying to close the last 25 years. we are just really not there yet, which i think i know that i didn't really appreciate that before i took this research. the other problem i believe is really related to that is when i started calling the trust gap when i started hearing the stories of women who just fell the reports of their symptoms were not believed by doctors. i think at first i sort of thought this is yet another realm where women's voices are not being treated the same already as men and that wasn't terribly surprising to me, but i think i came to sort of see

there is a real deeply embedded reason for this within medicine specifically and i kind of go through the history of hysteria in the book and in the 19th and 18th century there is this label for us or does mysterious symptoms in women and lots of really sexist theories about it tying it back to the room. by the end of the 20th century, after forwarded can be seen as a physical disease and as a psychological disorder and conversion of mental stress into physical symptoms. ever since medicine has had to concept which is very convenient that any physical symptom they can't explain can be just attributed to the patient's unconscious mind, which of course becomes a big problem if you have a group of patients

like women who have not been studied and included in research and so they have a lot of unexplained symptoms appeared and i think this has created a mutually reinforcing problem or because of this gap, women do have more unexplained symptoms, whether their symptoms are unrecognized by the fact it's from a drug benefit that studied studied in women at all are from an autoimmune disease that the system is just not good at recognizing and diagnosing. this sort of the more doctors women be for the symptoms, the more dark risk it the impression that their offices are filled with these women who have symptoms they can't explain and it must be all in their head. so i think the knowledge gap is kind of created this stereotype that is really impacting women. and i think in some ways the way

these two dynamics play out has made this problem. deeply entrenched so that it's perpetuated, even despite the best intentions of most health care providers very much want to be treating their patients the same and sometimes they think actually don't even know that they're not because this has become really systemic and an unconscious dais. so that is the case laid out in the book. i am just going to read a section from the chapter on chronic pain. so, chronic pain affects 100 million people in the united states, which is an enormous number of people and it gets very, very little finding and has been a neglect did overlook

thing and part of that is for a long time to sort of many comics waned chronic pain with sina psychogenic and there has been a shift over the past few decades to have a new understanding of chronic pain. but i think it's pretty clear that part of the reason that shift has not happened until now is that chronic pain disproportionately affects women. so this is a section heard of talking about that transformation. jimenez in the medicine people this transformation in our understanding of pain from the contrary, doctors seem pretty satisfied with their existing explanations for pain. the implications of this theory -- these notions were generally not for a while received initially particularly by physicians who believe that pain in the absence of the college are simply due to

individuals seeking worker insurance related compensation. opioid drug seekers in patients with psychiatric disturbances, i.e. blinkered word hysterics he writes. amplification of pain might be a real neurobiological phenomenon yet one that contributes to diverse clinical pain condition to be unlikely in most clinicians preferred to have psychosomatic or somatoform disorder to define pain condition he did not understand. it is surely not just a coincidence most of these hysterics were women. to be sure the last of knowledge about chronic pain has affected all pain patients male or female over the years and certainly many men with karnik unexplained pain have encountered their fair share of dark areas who disbelieve them or dismiss their symptoms. a gender difference in how likely doctors are too set on psychological explanations for chronic pain.

cynthia has seen us play now as an advocate for women in pain over the last two decades. shoes.com plucks regional pain sister and after she pulled her hamstring is a ballet dancer in the 80s. crps affects three times or minus minutes at poorly understood neuropathic pain condition in which an entry which can be as minor as a small cut trekkers wildly disproportionate pain often accompanied by swelling, discoloration, excessive sweating and changes in skin temperature. the crane spreads beyond the original inquiry to the whole and sometimes moves to the rest of the body, too. the condition was first classified as a type of hysteria minor and was psychometric suspicion. these days up rocks that lay 50,000 new cases are diagnosed annually and experts believe the true number is likely higher as

patients, particularly those of the type that is a link to a cervical nerve injury are accused of investing for exaggerating their pain. hamstring pain just never went away. a year and a half later a similar burning pain developed in her opposite leg. after six years the pain had jumped to both of her arms. for five years it ravaged her vocal cords, leaving her unable to speak. but for over a decade she went undiagnosed. women have to prove that we are really in pain she says. i spent 13 years been disbelieved. one doctor suggested she take a truth serum to see if she was making it up. another thought the pain was a manifestation of stage fright. eventually reliant on a wheelchair and at times suicidal, she was accused by one doctor of enjoying the secondary gain she was receiving from her attentive partner. one other women that chronic pain share their stories with her, typically one of the first thing out of their mouths is i'm

not crazy like that is tommy. all focused on women's pain, occasionally hearing from men with chronic pain is always eager to learn about their experiences. in many ways the stories are just like the women. the same frustration with doctors offering few answers and even fewer effective treatment in the same isolation from friends and family can't truly and in the yearning for the life they had traders often one glaring difference. then usually done off for a preemptive defense of their health or their pain. i would have sent at any point in the song horrible frustrating journey to the doctor's disbelieve you are so you're crazy and i would generally get something like now, i can't really relate to that. it was the same story. lost my life, career, dreams, but the men were believed in that respect was something we women were not given. women with chronic pain face the same challenges women with acute

pain. how do you demonstrate how much pain you are in without being seen as either hysterical or else not in much pain at all. but this is unexplained chronic pain, threading the needle is a never-ending and often all but impossible feat with no observable cause of the pain, the patient's expression of it is the only evidence for it. women's expressions of pain whether through words or tears are viewed as emotional and many women with chronic pain into bill shuster to be taken seriously. in 2002, a pain specialist at northwestern university described how acutely aware of her fellow health care providers and her fellow health care providers interpreted simmons tears as a sign of emotional issues rather than physical pain. she pressured in the patients do you separate resource they could to not cry before referring them to other talk to us. but of course if the goal is to better demonstrate the severity of your pain, there's obvious

risks to a strategy that amounts to downplaying it. women with chronic pain often report trying to be anti-hysterical to the point of actually being dishonest about how much pain they are in. a 2007 study doctor-patient interactions in chronic pain management know female patients much strike a balance between conveying their pain experiences accurately without inadvertently undermining their authenticity by being perceived according to negative genders. type spirits. while a stock response to pain may be expected in men, it is not expected in women. the woman who is raising her painted time yet is not falling to pieces may be met with suspicion as well, it's to be a malingerer whose inventing her pain entirely. as the title of the 2003 qualitative study concluded, it is hard work behaving as a credible patient. based on interviews with pain

patients in norway, and explored the work these women have to do in order to be believed, understood and taken seriously when consulting the doctor. quote, their efforts reflect a balance not to appear too strong or too weak, too healthier to say, too smart or too disarranged. the women described being assertive but not too assertive. they have to fight for their care, yet one patient explains you have to tread thoughtfully because once you antagonize them it's not certain you are any better off. the exhausting balancing act extended not just how they spoke and acted, but also how they looked. to put together they had a harder time being perceived as seriously ill. many women reported feeling as though they needed to adjust how they dress to avoid comments like yours looks so healthy from there.yours. she recalls her mother telling her to stop wearing makeup to the doctor's office when she was

a young woman searching for.there who would take her pain. sleep. this perception is right. studies have found health care providers have a strong is beautiful healthy bias. in 1996 the study found that they were perceived by their dock is to experience less pain for the female patients. they face an especially uphill battle attempting to be a credible patient. they complain health care providers don't trust the reports. in 2014, the national pain report conducted a survey of women with the range of pain conditions. including fibromyalgia, back pain, osteoarthritis, migraine and neuropathic pain. over 90% of them felt the health care system discriminated against female patients. over 80% felt they been treated differently by doctors than a man would've been into third

thoughts are doctors took the pain must seriously because they're women. 45% said the doctors told them their pain with solomon had. 60% said they admitted to not knowing what was wrong with them in three quarters just have to learn to live with their pain. if pain. if it is told as a result of childhood trauma. half of them told you look good so you must be feeling better. physicians turned pain patients to the bias that female pain patients. healing our biggest health problem, the most striking perspectives come from doctors who once they found themselves on the other side of the equation were shocked to realize how poorly the medical system understands pain. a female doctors thought it was the only other gendered medical expertise that provided them for being completely disbelieve. dr. karen brinkley, allergist

had to diagnose yourself with a broken toe was turned into crps for the doctor she saw as well as doctor friends whose brain she picked any ideas. it is only because i was a physician i have the knowledge and resources to help research may care myself she said. but she had been female patient, she had no doubt should be institutionalized if she had not been a physician and ben soper's ascent. and on that note. [applause] any questions? >> did you bump in indian issues issues -- [inaudible] any issues [inaudible] >> i didn't look too much into

insurance because that's sort of seemed to open a whole can of worms. but certainly did talk a bit about sort of how just the general sorted very yours who access the health care system obviously become an even worse problem if you have a lack of insurance or you have other financial religious tackle barriers that make your access to the medical system really tenuous. i can obviously make some of the issues i discuss in the book better sort of based on what is actually known in medicine and how doctors treat patients, like that of sort of a moot point as you just can't see a doctor at all. those kind of problems heighten the stakes they are were a lot of the women in the book ended up going to many, many doctors, seeing so many specialists before they were finally

diagnosed and of course for so many women that's just not an option. once or twice you might not be able to literally afford to see another specialist. that is a huge way recreates the divide with the most privileged people can really become the self advocate and fight persistently and put on their own financial time, resources and that being the ones who are able to get any care at all. >> are there any groups or centers where they acknowledge this -- [inaudible] i heard a clinic in wisconsin about pain management for migraines. do you know about any

enlightened -- [inaudible] >> the question is if i know about enlightened people within medicine doing work around these issues. certainly there's a lot of pockets of good work happening. since the 90s, the movement of sex engender pacific where people who have been looking at these differences and going back and looking, for instance in heart disease, which was that it almost exclusively in men, in the last 20 years has a lot of women's heart health experts have gotten back and said we need to sort of look and be if there were differences here and there actually are. differences in the symptoms and risk factors in the whole sordid female pattern heart disease that is recognized.

i think there is a kind of growing recognition that knowledge needs to get incorporated in education and i think the challenge is just a way to system is set up at every school has a different curriculum and there's not a way to just sort of waved a magic wand and everybody should learn that. the sort of statistic is that it takes 15 to 20 years for any new scientific knowledge to go from bench to bed side and be incorporated into practice. especially a challenge in this case because what they said kids are calling for us to make changes across the entire curricula inserted a great clinical area. there has been some growing recognition.

at mayo, there has been a summit for the past to come in maybe three that's brought together representatives from each medical school to talk about these issues. another hopeful sign i have heard is that a lot of medical students and younger doctors resorted to asking for this knowledge coming in now, are more aware and also very much putting some pressure to be like why are we learning this then, which i think will help things as well. >> how does the [inaudible] community view your boat? >> sort of resent. there's certainly a lot of leaders in medicine who are quoted in the book and i think are supportive of that. and, yeah, we'll see.

i hope that -- er, i hope it sparks some conversations with in medicine, another hopeful thing that i found in the research was a lot of women -- a few of the women i interviewed who had these experiences were really frustrating and they actually then went into medical school in sort of inspired them to go into the field, which is very impressive. so i feel like, yeah, i feel like there are a lot of good, young doctors thinking about these issues much more, so hopefully we'll be rising to positions of power quickly. other questions? >> should we send our doctor is a copy of this book? >> that was a real dream of mine. yeah, i think so.

so one of the big things i learned it was really shocking and also very helpful to understanding this problem is that, well, it's only in the last 10 years or so that people have really started to say that diagnostic errors and problems of misdiagnoses and delayed needlessly diagnoses have been a blind spot in medicine, which is something that hasn't been tracked systematically and so it's only in the last several years he asked her thursday this is a big problem that we don't even know the extent of the problem yet. and really point out that a lot of doctors are overconfident. they rate themselves as really great diagnostician, just sort

of like how most drivers think they are above average drivers. but the experts in diagnostic errors really make the point that it's not about sort of individual hubris or eric ends. it is just that they don't have the feedback they need to get an accurate sense of their batting average. there is just no mechanism in place for that sort of comeback to them and to sort of go back to the autoimmune example where these patients make up a huge 50 million people, 75% are going to see four.there is before they are finally diagnosed in the first doctors they see don't get the memo when they are finally diagnosed. they had the impression that they were right and so they assumed the woman was really just a stressed-out hypochondriac. i think it was really helpful to

seeing how this is sort of self-perpetuating really despite the best intentions of everybody involved. i don't even know how that related to your question. >> to cbs and cml and cio because they are the ones in charge of what the doc yours are doing i've been a practicing provider now i'm working during that kind of stuff. it is really funny to think about what she said -- i don't really have a question. have a conversation. the last 10 years and that is something having the user contact and touching people and really getting into the interaction were you understand and get a diagnosis. what i have learned recently is just how much weight those executives, so if you know anyone that works in the administration of the system, whether it is help partners or

hospitals or you're a provider in one of those, alt. or should have this, but those are the people that need this book now because your ears are totally painting to this. they are paying attention because they know we are upset that we have ever been because of access to information. i just think the conversations i'm having everyday. >> thinks. >> so what is next? is this the dean you to follow since the more topics? >> so what is next? there is actually so much that i didn't have space to include in the books i'm working on wrapping up a few articles that will come out talking about

related issues. but yeah, i agree it really feels like the time just feels really right to sort it but this under radar and make way with all up to me to movement and sort of the new consensus we seem to have that we should be listening to women trying to capitalize on that to put this on the radar because i do think it has been a strangely overlooked feminist issue that definitely has not got the attention that it deserves. >> do you also look at racial disparities? yeah, i talked a little bit about the intersection of various biases, but obviously huge in the medical system including racial bias. especially sort of a think one

of the big differences between sort of the way a white woman like me and a black woman is perceived is the black woman -- while the woman of color come especially black women really been impacted by the stereotype that they are drug seekers. i think actually a couple different women in the book in the book sort of eventually got to the point where they were reporting pain and it was unexplained and so they were accused of trying to seek pain killers. one of the women of color whose stories in the book, that sort of stereotype is front and center every time she went into the medical system to the point where she couldn't even get past the gatekeepers because he was just an automatic sort of assumption, which i think seems to be a problem this may be even worse now that there is a lot of justified focus on the opioid

epidemic and i think that has been impact being chronic pain patients are disproportionately women and disproportionately people of color and on top of that, sort of impact did these groups like women and patients of color who are even more likely to be disbelieved in now way. >> did you find any different behaviors with women physicians are meant position in terms of believability? >> yeah, the question is if i found any differences between female and male physician and i think sort of the anecdotes in the book i think they were playing the that were feeling dismissed by female physicians. i didn't really come across much systematic research looking at that question, but my personal opinion is that the big problems are really about sort of these

unconscious biases that women are not immune to, so i think that -- i don't think there's any guarantee of getting better care from a woman. that isn't to say it isn't important to get women into the medical system and they do tend to bring a different day then asked different questions and do more research and just kind of on an experiential level, there is a lot of value in having people who just by virtue of being women are more likely to have migraine for fibromyalgia or be very close to somebody who's experienced these conditions that have been neglected because they affect women and so yeah, might have

more basis to empathize in that regard. >> did you get any empathy training conversation in the book? did you talk about that at all? >> yeah, i didn't much. but coming out. put that on the list. >> what is the most surprising case or story that sticks out in your mind when you think about all the women united and interviewed. >> a target choose just one. it was actually just seen sort of patterns across all of these stories. i sent out a google talk were people just wrote their stories so i got almost 200 then did follow-up interviews of people to get sort of more in depth. even lucky not that wise, yeah,

seeing the patterns and when i started the research i didn't actually realize that there is so much silence around a six variances were i think a lot of women sort of internalized the dismissal or assumed that it was just sort of bad luck or maybe they could then something more to advocate for themselves, so attributed to their own feelings. that is totally understandable because they think it is something when you're just seeing one experience in isolation on your own, and it is sort of hard to see the big picture and imagine that maybe it is not just you. that is one thing that really hope it will come at even just for women to kind of see barracks. since validated and see that they are not alone in that and

that these are shared experiences will be hopefully powerful for women. and like i said, because of this lack of feedback, who'll be powerful for health care providers to realize this is maybe happening more than they assumed to be. is that a good way of not answering your question? [laughter] other questions? >> this isn't so much a question, but i was thinking about the unconscious bias, which is so pervasive and impractical as an entrance to this issue. the medical school has like a diversity office and we have a strong equity. from my dad, i think some establishments are more interested in discovering what is this about. there's just such a powerful example of it for the whole

historical legacy is so much we are dealing with that dealing with have never dealing with have never thought of that historical legacy and women in hysteria or feeling. it is just another way of getting out this. >> yeah, and that is another area where there is more interest than implicit bias, all sorts of implicit bias. like i said, i do think there is a lot of a lot of work that has started happening in the medical system focused on various aspects of the problem and so i hope that maybe one thing the book can do is tie these things together and kind of is a richer context to support that work could point out why it is necessary. >> i have a question about maternal mortality. i've been reading a lot about

how the rest of the first world it seems like we've are declining, but in the united states they are raising. wondering if your book touches on not at all. >> does the book touch on maternal mortality? it does not. i've spent to talk about that and then decided to leave sort of olive routine to help out of bed, even though i have a background in that. yes, i mean, i think i have also been reading a lot of the great work being done on this issue. anita martin and who is the npr reporter? yeah, but pro-public in the pr series has been really phenomenal. i think one of the things i really like about that series is they've done a great job of showing that this problem is not

just about sort of lack of access to care or health disparities, but really stirred up about treatment disparities in black women have like four times the rate of mortality to white women and that is not just due to higher rates of health conditions among them. they really assertive about racism and sexism. so yeah, that is one of the things that i'm really hoping the people who have been working on that issue sort of talk about some of the ways and the things they talk about in the books or to play it in that context because they absolutely do i just didn't included in the book. >> i'm curious. i'm sure you had an idea where this was going to go when you started writing.

what were your biggest surprises once you've delved into this? >> that is a good question. it is all such a blur to remember. i think i sort of -- [inaudible] >> everything was very shocking. >> were you planning to write a book? >> yeah, so i actually wrote an article that was about women's heart attack and new assertive about that, that touched on above these larger issues and on the basis of that was asked to write a book by an editor here. so it was something i was

thinking about this sort of started in earnest pretty quickly in a think i sort of had the sort of broad ideas about it even before doing too much of the research. but all of the sort of particulars was totally new to me. like i said, not something that is really on my radar even as an administrator is someone who cared about free project to help. some of that was a real wake-up call partly because i think i thought that it was sort of to the extent that it had been a problem, it was already solved and had been solved in the 90s and have been good. i hope it will be a sort of a wake-up call for younger women like me to find out that was for sure not the case. >> can you talk more about the hubris of the medical system?

why has this knowledge gap persisted? what is the reason why we have just large knowledge gaps? >> well, i mean, one of my point is that the knowledge that exists because of this trust gap we continue to sort of the race all of the gaps of knowledge by attributing them instead of acknowledging them as gaps in knowledge, sort of blaming them on hysteria and that way all of this knowledge gaps gaps get filled in and so you can actually sort of acknowledge as such, which i think helps explain why the knowledge gap wasn't even sort of on the radar until the 90s and they do

think sort of help explains why it has persisted to this day. >> thank you very much. [applause] we will have a signing up front. thank you for coming, everyone.