what we are talking about here is the absolute power of television in the political kidnapping in the form of warfare. we are very happy to welcome you here this evening presented in the new book doing harm. the writer and editor of the award-winning.com and a fellow at mother jones magazine.

she worked at the national institute for reproductive health and is a minnesota native currently in the twin cities this help me welcome. [applause] >> how about that. >> testing, testing. the how about this?

i am happy to be here in my home town not far from where i grew up. i thought i would speak a little bit about the book and how i got interested in the topic and do a short reading before opening it up for questions. so, i then here for almost a decade and have written about reproductive issues in that capacity that it wasn't until five years ago i started thinking about the system and how sexism was playing out and autoimmune diseases and how it would affect a ton of people in

the united states and how the epidemic didn't seem to be on the public radar and then start to realize so i actually had a good experience getting diagnosed and starting treatme treatment. i started learning a lot of autoimmune patients experience long diagnostic delays and go to for doctors over four years before they are properly diagnosed. and during that time, it would've them feel like their te symptoms are dismissed and are just sort of rhythm offense stressed-out so that was my entry point into thinking about these issues and a has often happens when you start asking

people about their experiences being a collector of stories that are similar and other stories to have a range of conditions that felt the same about systems were minimized or normalized. so this book kind of 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 are affecting the quality of care when they receive. first being the lack of knowledge about women's health and their bodies and their symptoms and this is a first part on the radar in the early 90's which seems like a long time ago to me because i was too young to remember it but there were congressional hearings on the problem and advocates

pointed out that women were underrepresented in clinical research at times the national institute of health and they urged researchers to include women that didn't seem to be enforcing it at all. the major source of foundational studies that were done and nobody thought that might be a problem. and at the time it was excluding women of childbearing age from these trifles as a sort of general hesitancy about including women and drug research into so that sparked some changes including the federal law that requires women are included in the federally funded research. but i was surprised to learn how little has changed for how slow the progress was started in the

period in the early '90s and it lets new scientific knowledge has emerged that women be included in the studies and there was greater funding for the traditions that affected them, but i sort of have this impression that the medical systems of the scientific cutting edge knowledge would be incorporated immediately into the medical education and nothing could sort of be further from the truth. these are slow-moving institutions i i-india love that knowledgin the a lot ofthat knon the critical practices so we are seeing this gap we've been trying to close for the last 25 years we are just really not

there yet and i know i didn't appreciate that people rated this research. the other problem that is related to that is what i started calling the trust when they heard stories of women who felt their systems were not relieved and i thought that this was just another round women's voices were not being treated with the same authority. there is a deeply embedded reason for this in medicine, specifically in the history of this area ther is illegal for ay

mysterious symptoms that reallyy sexist theories tying it back to the wandering room and by the beginning of the 20th century it was seen instead as a physical disease but a psychological disorder and convert the mental stress and physical symptoms. ever since medicine has had this concept which is convenient it can be dressed attributed to a patient's problem if you have a group of patients like women who haven't been studied and explained the symptoms so i think that this created a sort of mutually reinforcing problem where because of this knowledge gap they have more unexplained symptoms, whether they are

unrecognized effects from a drug that wasn't studied at all or that the system is just not good at recognizing and diagnosing. but the more doctors when in c. for those symptoms, the more they get the impression that their offices are filled with those women that have symptoms they can't explain it must be just all in their head so that puts the knowledge gap that has created a stereotype that is impacting other women and the way that these dynamics play out has made it entrenched despite the fact they want to be treating their patients the same

and sometimes i think they don't even know that they are not because it's become this systemic and unconscious bias. so that is the case laid out in the book and i'm just going to read a section from the chapter on chronic pain that affects 100 million people in the united states, which is an enormous amount of people that it gets very little funding and has been sort of a neglected overlooked thing and part of that is any unexplained chronic pain was seen as psychogenic and there has been a surge the past few decades to have a new

understanding of chronic pain, but understanding that the shift has not happened until now that kind of pain disproportionately affects women so this is a story talking about that transformation. >> even welcoming the transformation and understanding of pain on the contrary many doctors including with their existing explanations for pain according to the implications of this embrace the first but isn't very well received initially but the pain and absence was due to the individuals seeking compensation, opioid drug seekers and patients with psychiatric disturbances. the amplification of pain might be a real biological phenomenon that contributes to the pain

traditions and seems to them to be unlikely. they prefer to use labels like psychosomatic disorders to define conditions they didn't understand. it's not just a coincidence that most of these are women. to be sure it's affected all patients male and female over the years. many men with chronic pain have encountered their fair share of doctors who dismissed their systems. the symptoms. ther.there is evidence and how y the doctors are the psychological explanations for chronic pain. cynthia has seen this play out as an advocate for women in pain over the last few decades. the regional pain syndrome after she pulled her hamstring as a promising dancer in the 80s it

affects three times more women than men is a pain condition in which an injury can be as minor as a small cut and triggers pain accompanied by swelling, skin discoloration, and changes in skin temperature. it spread beyond and sometimes moved to the rest of the body. the condition o with this type f hysteria by the psychosomatic submissions these days 50,000 new cases are diagnosed annually in experts believe the two numbers likely hires and patients particularly those of the type that continue to be accused of exaggerating their pain. to think it just never went away a year and a half later a similar pain developed in her hr opposite leg after another six years it jumped to both arms ind

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 in pain. i spent 13 years being is believed. one dr. suggested she take a truth serum to prove she was making it up and another father was a manifestation of stage fright. eventually to a wheelchair and at times suicidal she was accused by one doctor of enjoying. it tells me when other women with pain and shared their storieshared their storieswith e first things out of their mouth is i'm not crazy like the doctors tell me. to hear from men with chronic pain she's 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 fewer effective treatments isolation from friends and family who can't truly understand the same life they once had but there is a difference, they usually don't offer a preemptive defense of their mental health and reality of their pain. sometimes i would ask them if there any point in this frustrating journey that would say you are crazy and i would generally get something like i can't really relate to that. it was the same story. i lost my life, career and dream but it was something that we were not given. women with chronic pain face the same challenge as those with acute pain. how do you demonstrate how much pain you were in without being seen as hysterical or else that without pain at all. threading the needle is a never ending and often all but impossible feat with no cause of the pain the patient's expression is the only evidence

for it. the expressions rather through words, grimaces or tears are viewed as the emotional and thed beanie sigel trusted to be taken seriously. in 2002 an article at northwestern university describes how acutely aware her fellow healthcare provider interpreted as a sign of emotional issues rather than physical pain and how to use every resource they could muster to not cry before referring them to other doctors at the goal is to better demonstrate the severity of the pain and the obvious risks to a strategy to downplaying it. women with chronic pain report being anti-hysterical to the point of being dishonest about how much pain they are in. as authors of a study of doctor-patient introductions and chronic pain management no

female patients must strike between their pain experiences accurately without inadvertently undermining their authenticity by being perceived according to the negative gender stereotype. in the case illustrated while the response may be expected in may and it's not expected in women. a woman raping her pain is a ten but isn't falling to pieces may be a suspicion. as the title of the series concluded it's hard work behaving as a credible patient. based on interviews with pain patients explores the work these women have to do to be the lead, understoorelieved,understood any when consulting a doctor. their efforts reflect the balance not to appear too strong or weak, too smart or too

disarranged. they describe walking a tightrope of being assertive but not too assertive. you have to tread softly because once you antagonize them you are not any better off. it was not just how they spoke and acted also how they looked. to put it together they had a harder time of being perceived. many of the women reported feeling as though they needed to adjust how they dress like you always look so healthy from their doctors. she recalls her mother telling her to stop wearing makeup to the doctor's office when she was a young woman searching for a doctor to take her pain seriously. they have a strong healthy diets especially when it comes to women. a study found patients judged were perceived by their doctors to be experiencing less pain and

it was held only for the female patients. one of those with these pain conditions face an uphill battle in attempting to be a credible patient women with many kinds of pain complaint .-full-stop providers don't trust their reports. in 2014, they teamed up with online news sites to conduct a survey of 2,400 women with a range of pain conditions including fibromyalgia, arthritis, migraines and over 90% of them thought the healthcare system discriminates against female patients. over 80% felt they had been treated differently than a man would happen and two thirds to givtookhim less seriously becauy were women. 45% told them the pain was all in their head. 60% said they admitted to not knowing what was wrong and three quarters were told they hav hado learn to live with their pain.

it was a resul the result of chd trauma. over half were told you look gooto look goodso you must be f. physicians turn them and in general healing the biggest health problem some of 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. they sold was only thei saw thar gender and medical expertise. they analogous and associate professor of medicine had to diagnose herself when it turned into [inaudible] the doctors she so didn't have any ideas. it was only because i was a physician i have the knowledge and research to help. if she had been your average

female patient, brinkley had no doubt i would be institutionalized and then still persistent. and on that note. [applause] >> any questions? i didn't look too much into the insurance because that seemed to open up a whole can of worms is. that certainly we did talk about how the general sort of barriers to access to the healthcare system obviously become an even

worse problem if you have other financial or logistical barriers that make your access really tenuous that can obviously make some of the issues i discuss in the book that are sort of based on what is known in medicine and how doctors treat patients that is a sort of moot point but also they just tighten the stakes where it would've the women ended up going to doctors into seeing specialists before they were finally diagnosed and got the help they need and for so many women that just is not an option if you are dismissed once or twice, you might not literally be able to afford to see another specialist, so that is a huge way of creating this

divide where the privileged people can become these self advocates and fight persistently and put in so much of their own sort of financial finance resources and end up being the ones that are able to get any care at all. >> are you aware of any groups where they acknowledged this and try to integrate technology? does it clinic in wisconsin that deals with pain management for migraines. do you know about any enlightened? >> the question is if i know about enlightened people giving medicine doing work on these issues and certainly i think there are a lot of pockets of good work happening as since the

'90s there's been a movement of the gender specific medicine where people have been looking at these differences and then sort of looking at heart disease which was studied almost exclusively in men for the first 35 years it was studied and the last 20 years has a lot of women's heart health experts that have gone back and said we need to look and see if there are differences here and there are differences and systems and risk factors and that whole sort of female pattern of heart disease that's recognized and so i think there is a sort of growing recognition that that knowledge needs to ge get incorporated into the medical education and i think that the challenge is just the way the system is set up as every school

has the curriculum and there isn't a way to wave a magic wand and right now everybody should just learn this. for any new scientific knowledge to go from bench to bedside in the clinical practice and i think it is in this case with the advocates are calling for is basically to sort of make changes across the entire curriculum in mike in preclinical area but there has been some growing recognition. there's been a summit for the past two or maybe three years that's brought together representatives from each medical school to talk about these issues and another hopeful sign i have heard is a lot of

medical students and younger doctors are sort of asking for this knowledge and are more aware and also very much sort of putting pressure like why aren't we still learning this which will help things as well how does the community view your bookmarks it is so recent there's definitely a lot of leaders in medicine who are quoted in the book and i think are supportive of it. we will see. i hope that it sparks some conversations within medicine and another hopeful thing i found in the research was a lot of women or a few of thos those interviewed had these experiences were patients that

were frustrated and then went into medical school and it sort of inspired them to go into the field which is very impressive, so i feel like there's a lot of good doctors who are thinking about these issues much more who hopefully will be rising to positions of power quickly. >> another question? >> should we be sending our doctors a copy of this book? [laughter] >> that was a dream of mine. one of the big things i learned that was shocking and helpful to understanding this problem is to fall in the last ten years or so

people started to say the diagnostic errors and misdiagnoses and delayed have been a sort of blind spot in medicine that is something that hasn't been tracked systematically so it is only in the last several years experts say this is a big problem we don't even know the extent of thathe problem yet and point out that a lot of doctors are overconfident and rate themselves as great physicians like most drivers think they are above average drivers. the experts make the point it's not about the sort of individual hubris or aggregate it's just they don't have the feedback they need to get accurate

batting average is because there is no mechanism in place for that to come back to dems to go back to the autoimmune example where these patients that make up a huge 75% of them women are going to doctors before they are diagnosed and the first ones don't get the memo so they have the impression unless they hear otherwise she was just a stressed-out hypochondriac so that was helpful to see how it was self-perpetuating despite the best intentions of everybody involved. i don't know how that related to your question.

>> they are in charge of what the doctors are doing. i've been a practicing provider but it's funny to think about them having to lose our contact independent introduction of getting the diagnosis but i learned recently how much weight of getting those executives, so whether it is health partners or hospitals those are the people that need this book now. they are paying attention

because they know we are upset and smarter than we have probably ever been with this access to information. it's the conversations i'm having a great day [inaudible] there is so much i didn't have space to include wrapping up the articles that will come up talking about related issues that i agree the time feels right to put this on the radar in a big way and with all of the me two movements and the new

consensus that we should be listening to women and try to capitalize on that to do this on the radar because it has been a strangely overlooked feminist issue that definitely hasn't gotten the attention that it deserves. >> i talked about the intersection that's huge in the medical system including the racial bias and especially one of the differences between sort of the way that he likes women like me anwomanlike me and a bls perceived, the women of course being impacted by the stereotype

and a couple different women in the buck stops at the point they were reporting pain and it wasn't explained and they were accused of trying to seek out pain killers but one of the one and the stereotype is front and center every time she went into the medical system to the point she couldn't even get past because it was an automatic assumption which seems to be a problem that is maybe worse now that there's a lot of justified focus on the epidemic and that has been impacted and who aren't

likely to be received in that way. >> did you find any behaviors in terms of believability? >> the question is if they found any differences between the male and female physicians and i think i there were plenty that were missed by female physicians and i didn't come across the research looking at that question but my opinion is that these are really about what is taught and the biases that women are not immune to, so i don't think there is any guarantee of getting better care but that

isn't to say that it's not important to get more women into the medical system and i think they do tend to bring sort of a different perspective and ask different questions and do more research on the women' women's h conditions and sort of just on a kind of experiential level there's a lot of value in having people that just by virtue of being women are more likely to have migraine or fibromyalgia or to be close to 70 but has experienced these conditions that have been neglected because they affect women and so it might have more of a basis to sort of empathized in that regard. >> did you get any empathy training conversations in the book like did you talk about that sort of hot topic in medical schools right now?

>> what's one of the most surprising cases or stories stuck in your mind when you think about all the wome women t you've met and interviewed? >> that's hard. i think for me it was powerful justice being sort of patterns across all of these stories and i set out a google document people just wrote their stories so i got almost like 200 then did follow-up interviews to get more in-depth but even just looking at that, seeing the patterns and when i started the research i did realize there was so much violence around these experiences where i think a lot of women sort of internalized the dismissal or thought or

assumed it was just sort of bad luck or maybe they could have done something more to advocate for themselves or attributes to their own feelings and that is totally understandable because it is something where when you are just seeing one experience in isolation is sort of hard to see the big picture and to imagine that maybe it's not just you so that's one thing i hope will even just for women to see their experiences validated and that they are not alone and the shared experiences will be powerful for women because of this lack of feedback it will be powerful for healthcare providers also to realize it is happening more than it was meant to be.

this isn't so much a question but i was thinking about the bias that is so pervasive and i was the on one who's had sent ts to george doctor but from that perspective, people, some establishments are interested in discovering what this is about and this was just such a powerful example of it where the whole historical level of so much of what we are viewing we never thought of the legacy of women in hysteria or feelings of all posting so it's just another way of getting at this.

>> that is an area that there is more interest in the implicit bias. i do think that there is a lot of work that's already happening in the medical sense i'm focused on various aspects of the problem and i hope that one thing the book can do is tie these things together and kind of show a larger context to support that work and point out why it isn't necessary. >> i have a question about maternal mortality. i've been reading about how in the world it seems like the rate is declining but in the united states they are rising and i wonder if your book touches on that of all. >> it does not. i had planned to talk about that

and then decided to use all of the routine reproductive health. the work that is being done on this issue, who is the npr reporter? one of the things i like about that is they've done a great job showing that this problem is not just about this part of lack of access to care that it's about sort of treatment disparities that they have four times the

rate. that is one of those things i'm hoping people that have been working on that issue talk about some of the ways i talk about the book play out in that context because i think they absolutely do i just didn't include it in the book. >> i'm sure you have an idea. what are your biggest surprises? >> that is a good question. it's all such a blur.

it was all very shocking to. >> were you just doing research and then it turned into a book? >> i wrote an article that was about women's heart attacks and it was about that but it touched on some of these larger issues and on the basis was asked to write the book and it's something i was thinking about ithat started in earnest pretty quickly. i think i have those broad ideas about it even before getting too much of the research. but all of this sort of particulars was totally new to

me and not something that was on my radar. if ia lot of it was shocking anw into a sort of wake-up call partly because i thought to the extent that it had been a problem it was all pretty soft and have been solved in the '90s and was probably good, so i think it would be a wake-up call especially for the younger women like me to find that for sure is not the case. >> can you say more about the medical system? >> what's the reason we have these large caps? >> one of my points is that the knowledge gap persists because

of a test gap where we continue to erase all of the gaps in knowledge by attributing them instead of acknowledging them as gaps in knowledge and blaming them on the hysteria in that way they will get spilled in so they are not even sort of acknowledged as much which i think helps explain why the knowledge gap wasn't on the radar until the nine and helps explain why it has persisted to this day. [applause]

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