“Doing Harm”: Maya Dusenbery’s new book

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters 

Author Maya Dusenbery interviewed me while I was neck-deep in final copy edits of the book I was writing for Johns Hopkins University Press, A Woman’s Guide to Living with Heart Disease.  She wanted to talk about why I thought female heart patients are more likely to be under-diagnosed than men, and then – worse! – more likely to be under-treated even when appropriately diagnosed. Maya was writing her own book at the time, and it’s finally out this week. Its pithy title sums up the focus pretty succinctly: Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. Here’s a 10-word summary of her book:

My own review of Dusenbery’s book starts with this warning to my heart sisters: “Do NOT start reading ‘Doing Harm’ unless you have first taken your blood pressure meds!”   

I offer this cautionary advice because, although I’ve been writing my Heart Sisters blog posts (here, here and here, for example) about the well-reported cardiology gender gap in women’s heart disease, everything I read in Doing Harm – across the board throughout almost every medical specialty including heart disease – made me want to go have a wee lie-down to recover.

Like me, Dusenbery includes hundreds of credible research citations – like that of Emergency physician Dr. Alyson McGregor at Brown University, and co-author of the medical textbook, Sex and Gender in Acute Care Medicine, who told her:

”   It’s amazing and really alarming to see that cardiac arrest, stroke, sepsis—in almost all of these conditions, women receive less intense care.”

Indeed, when you read Dusenbery’s broad coverage of modern medicine’s view of women’s health issues overall – no matter the diagnosis – it’s likely you will feel even worse than you do now when you read something like this (from the section of Doing Harm called “The Disorders Formerly Known as Hysteria):

“Chronic illness, with its invisible symptoms of fatigue and pain, is largely the burden of women. And it’s worth considering to what extent its relative neglect by the medical system is because it mostly affects women, whose complaints are so often heard not as a roar, but as a whine.

“Are women’s complaints so often dismissed because doctors simply don’t know enough about their bodies, their symptoms, and the diseases that disproportionately affect them?

“Or are women’s complaints so often dismissed because doctors hold an unconscious stereotype that women are unreliable reporters of their symptoms?”‘

Here’s an example of what Dusenbery says about the pervasive effects on women if our distressing symptoms are not taken seriously:.

“(Women) often internalize the experience of being dismissed by doctors.
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“Even as so-called empowered, highly educated, and privileged patients, there’s still a lot of deference given to medical professionals and physicians. It’s hard to push back when an expert is saying, ‘Nothing is wrong’.”
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Not surprisingly, Dusenbery’s book includes several pages exploring women’s heart disease specifically. Here, for example, is a disturbing bit of “awareness” history from the American Heart Association (AHA):
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“In 1964, the AHA held its first official conference on women and heart disease.
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“Advertised ‘for women only’, it was called Hearts and Husbands: The First Women’s Conference on Coronary Heart Disease.
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“Ten thousand women gathered to get tips on how to keep their husbands from developing heart disease and how to care for them if they did. It would be another 25 years before the AHA held a conference that was actually about heart disease in women.
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“Heart disease had become so thoroughly imagined as a ‘man’s disease’ in the middle of the twentieth century that, back in 1964, nobody really batted an eye when that first conference geared toward women was all about preventing their husbands from getting it.
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“In 2016, the association released its first official scientific statement on the topic; over 50 years after that first conference, it declared that, despite some progress over the last two decades, ‘heart disease remains understudied, underdiagnosed, and undertreated in women.’
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“And according to a 2017 survey, only 22 percent of primary care physicians and 42 percent of cardiologists said they felt well prepared to assess women’s cardiovascular risk.”
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“You could be forgiven for thinking that heart disease is rare in women.
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“In fact, cardiovascular disease, which along with coronary artery disease – the cause of most heart attacks – includes conditions like stroke, heart failure, arrhythmias, and heart valve problems, has been the leading cause of death for women for over a century. About one in three deaths among women each year is from heart-related causes, significantly more than from all kinds of cancer combined.”
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Dusenbery offers a comprehensive section on the difference between the textbook Hollywood Heart Attack experienced – and thus studied – mostly in (white middle-aged) men, compared to women’s experience of non-obstructive heart disease (like the coronary microvascular disease that I live with, diagnosed months after surviving my own ‘widow maker’ heart attack):
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“In 1996, the National Heart, Lung, and Blood Institute launched the Women’s Ischemia Syndrome Evaluation (WISE) study, a groundbreaking research project to correct the decades-long focus on men’s heart disease. Indeed, while most people who have a heart attack have obstructive coronary artery disease (CAD), a minority of them – more of them women – don’t.”
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This book explores the ironic reality that, while we may now have more knowledge about sex/gender differences in heart disease than perhaps any other area of medicine, there is also now “a wealth of research documenting the gender disparities that stubbornly persist in diagnosing, preventing, and treating it in women.”
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As cardiologist Dr. C. Noel Bairey Merz, director of the Barbra Streisand Women’s Heart Center at the Cedars-Sinai Heart Institute, observed:
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.“The diagnostic and therapeutic strategies which had been developed in men, by men, for men for the last 50 years weren’t working so well for women.“We’ve been working on (female-pattern heart disease) for 15 years, and we’ve been working on male-pattern disease for 50 years.

“So we’re 35 years behind.'”
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As you read that, you might be wondering how this cardiology gender gap could possibly still be happening in  women?
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The reality is that when medical conditions like heart disease are diagnosed and treated based on decades of clinical research focused mostly on (white, middle-aged) male subjects (yes, including even the use of male laboratory animals in research), it’s hardly surprising that patients who are not males may still be missing out.
Dusenbery quotes Dr. McGregor on this reality, who says:
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“When you come to the emergency department with chest pain, all of the protocols that we undergo – what happens to you, what tests we do, whether you get admitted, whether you get further testing, what medications you’re on – they’re all designed based upon a male pattern of heart disease.”
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Dusenbery also discusses the myth that “younger women don’t get heart disease”, and points to the danger of what Dr. Katarina Hamberg of Sweden’s Umeå University has called a “knowledge-mediated bias.”
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“While an awareness that men or women have, on average, greater or lesser risks of certain diseases is important and useful up to a point, this awareness can lead to diseases becoming so stereotyped as a ‘man’s disease’ or a ‘woman’s disease’ that doctors are blinded to the individual in front of them – to the extent that the stereotype actually becomes self-fulfilling: knowing a condition is more common in one gender tends to result in its under-diagnosis in the other gender.”

Dusenbery asks – and answers – this question about the reasons for such blindness:

“Is it a lack of knowledge or a lack of trust?

“It seems to be both. The knowledge gap and the trust gap are so tightly interwoven at this point that they could be thought of as two sides of the same coin. Women’s symptoms are not taken seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”

So what can we do to improve diagnostic tools, treatments and support for women’s healthcare? Dusenbery suggests:

“It is the funders, scientific journal editors, and researchers at all levels of biomedical research who need to help build a consensus within the research community that analyzing study results to detect potential sex/gender differences is just good science.  And integrating the emerging knowledge of those differences into medical school curricula is a challenging task that requires the will of those within medicine. The same goes for reforms to give medical students more education about the implicit biases that can a ect them and to ensure that doctors receive more sorely needed feedback on their diagnostic errors.”

As Maya Dusenbery told a UC Berkeley Greater Good interviewer:

“I want to make clear that it shouldn’t be on individual women to have to become super advocates for themselves and super educated and learn everything in order to get proper medical care. We should be able to rely on the medical system. I hope patient advocacy can help birth changes, but that people within medicine will really take on this problem.

“They’re the ones who we need to fix it.”

♥

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See also:

My book “A Woman’s Guide to Living with Heart Disease“ reads like the“Best Of”  900+ Heart Sisters blog articles.  You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN  to save 30% off the list price).

Same Heart Attack, Same Misdiagnosis – But One Big Difference

Misdiagnosis: is it What Doctors Think, or HOW They Think?

When Your “Significant EKG Changes” are Missed

Yentl Syndrome: Cardiology’s Gender Gap is Alive and Well

How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories

Diagnosis – and Misdiagnosis – of Women’s Heart Disease

14 Reasons To Be Glad You’re A Man When You’re Having a Heart Attack

His and Hers Heart Attacks

What is Causing my Chest Pain?

When Your Doctor Mislabels You As an “Anxious Female”

Heart Disease: Not Just A Man’s Disease Anymore

How Doctors Discovered That Women Have Heart Disease, Too

Gender Differences in Heart Attack Treatment Contribute To Women’s Higher Death Rates

How a Woman’s Heart Attack is Different From A Man’s

Published by Carolyn Thomas

67 thoughts on ““Doing Harm”: Maya Dusenbery’s new book”

  1. I need to read “Doing Harm” because as one who has seen her ambitious life decimated, first when disabled by ME/CFS (a disease disproportionately affecting women & grievously underfunded, misunderstood, disrespected) & second by neurological symptoms for which I’ve had to battle with multiple doctors to be taken seriously, I’m angry & ready to become an activist/advocate & need more ammunition but am low-income due to disabilities.

    BOOK CONTEST

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    1. Thanks for the reminder, Hannah. It’s so challenging for patient activists/advocates with debilitating symptoms and limited resources to function the way they used to be able to!

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  2. I am a Registered Nurse. For 35 Years, I worked as a Nurse Clinical Specialist in Psychiatry. Unfortunately, I have had a lifetime of frustration in dealing with my own medical care.

    An OB I saw would pat me on my head, told me that HE would take care of “everything “. I saw him later in life, he wondered where had I been. I informed him that I had found an OB who listened to me. He found it hard to believe that I had had natural childbirth (something the old OB had told me I wouldn’t be able to do).

    I have: Sjogren’s Syndrome, severe arthritis, coronary artery disease and COPD (never smoked a day in my life). I had a quadruple bypass at Mayo Clinic and even there, I encountered the Old Boy MDs. Makes a girl crazy!

    Some of them kept repeating their questions, as if they couldn’t believe what I was saying to them. They wouldn’t have been this way with a male patient. Sent me to a cardiac rehab facility that they would have not sent a male executive to. It was dirty, understaffed, terrible food and had an illegal medication delivery system. It was not until I was leaving that I found out that Mayo had their own rehab facility. It was never offered to me, must have been filled up with men.

    Recently, I had to go to a local ER. I had severe pain in my right leg and foot. I couldn’t stand on it or have a sheet over it. It was an 8 on the old pain scale. I called an ambulance and was pretty much ignored by the two firemen. My son (a paramedic) in another state said “Mom, didn’t they offer you a pain med? They have them on board their ambulance”. NO, they did not offer me anything! They, more or less, dumped me into the ED and left me there. That is when things became worse. A FEMALE triage nurse, shoved me into the waiting room, without blinking an eye. I had someone help me to a bench and I laid there for 31/2 very painful, crying hours, before being offered care!

    My point is that male and some female Practitioners DO NOT listen carefully to what their female patients tell them. As a fellow RN told me when she saw me, “that these people know that a nurse will not show up, unless it is due to severe pain”. I suggested that she bring it up at the next medical meeting and it should be applied to ALL women, not just the medical ones. How they treat their own mothers.

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    1. Virginia, I used to think that doctors and nurses would automatically be treated with extra care and attention when they sought medical help (because they were professional colleagues of the care providers) but I’ve heard from a number of docs/nurses that instead, they found this was NOT true. Dr. Itzhak Brook who was diagnosed with throat cancer wrote about lying helplessly in bed watching a senior resident clean his obstructed tracheotomy tube (but without using sterile techniques); when Brook asked him to clean the dirty tube better, the resident snapped: “We call the shots around here!” So this kind of unacceptable care can happen to male patients, too – even male doctors.

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    2. To add to my post, I would like to be considered for a copy of “Doing Harm”. I have been educating MD’s and women I see in Rehab. They receive just a couple papers for themselves. Hopefully, they pass them to their friends and doctors. To have new material, to hopefully educate women, considering that our numbers are higher than men.

      I had a Pulmonologist MD appt. today. I explained my bad reaction to a medicine she had given me, ruined Thanksgiving and Christmas. She kept saying that had it to be “something else”. Then, I asked about charges for the last 6 months, charging different amounts for the same services. WOW – it was a red flag to a bull. Needless to say, she didn’t say goodbye. To be a polite and assertive woman today, was not acceptable. It will not change who I am.

      Carolyn, I am in awe of how much you are doing for us. Many a bad day, your email would come and put a smile on my face!
      Thank you, again.

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      1. You’re entered in the book draw, Virginia! Your pulmonologist appointment conversation is maddening, and of course begs the question: do men have to beg to be believed when they tell THEIR docs about severe drug side effects? Thanks so much for your kind comments about my blog.

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  3. BOOK:
    I would like winning this book. Funds low and hard to afford, as I no longer actively practice Medicine. Would like to read and share with as many others as possible, including my medical teams.
    Kimberly Conner-Chatman, MMSc, PA-C

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    2. Yes, I carry that kind of letter too, but I suppose useless NOW. You know, just my lot in life, from a cardio many of us have seen in GA. So frustrating.

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  4. BOOK CONTEST…. I’d like to win this book and after reading it, donate it to our local library…..and then offer to have a group that discusses it ( after women finish reading it and taking notes…) Perhaps the library would do a Women’s Heart series and promote other books on women’s heart issues….like yours!!!

    I’m 78 and have dealt with so many Cardiologists over the years….and “fired” many. One who stands out for me stood over me shouting at me…spittle hitting my face as he raged that my atrial fib was “not that bad” and I had no right to get a second opinion, let alone an ablation to stop it before my heart failure continued to worsen…. Another told me I had 70% blockage in my heart arteries and would need surgery in a few months….second opinion doc revealed it was actually 30%!

    Women need to hear the truth….learn to stand up for themselves and not be intimidated by white coated, closed minded men or women who think they know us when they don’t.
    Being discounted, dismissed, and denied adequate care has made me a fierce defender of the frightened little girl who lives within me and to protect her from further medical abuse.

    There….rant over…I feel better….!

    Sunny Mills

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    1. Hi Sunny! I can tell just by reading your “rant” that you are indeed “fierce”! ♥ I love that image of your “frightened little girl who lives within me”. I have one of those, too.

      For example, when I was scolded by a stern ER nurse (before being misdiagnosed with acid reflux and sent home in mid-heart attack) for having asked a question of her ER doctor/colleague (She’d snapped at me: “He is a very good doctor and he does NOT like to be questioned!”), I felt so humiliated and embarrassed that I somehow forgot I was a grown woman who was very sick and who did not deserve to be spoken to like that. I couldn’t get out of there fast enough. I wish I had been a fierce defender back then, because all I’d done was to dare to ask a very reasonable question: “But doc, what about this pain down my left arm?”

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      1. I don’t think the subjective and biased treatment will ever stop. Certainly, it is an added burden that is not only needless, but dangerous. It’s also just plain stupid.

        There were many male patients in the ER this afternoon. I saw how all medical staff cooed over them. I came home with “information papers” on anxiety disorder… and yet, also, a detailed information pamphlet on basal cell carcinoma, although there was zero evidence for a carcinoma of any type. Now, I ask you… It is as though they want to kill us.

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  6. BOOK CONTEST!! I would LOVE to win this book!!

    I am an RN and SCAD survivor. It can be so tiring being an ER patient post-SCAD (and I used to WORK in the ER!) trying to educate healthcare professionals about what happened to me, why I don’t take this medicine, etc.

    I would read this book as quickly as I read yours, then pass it on to my cardiologist and/or cardiac nurses I know.

    What I read in your blog typically astounds me, but then sadly it doesn’t really surprise me. I recommend it to anybody that will listen.

    Thanks for all you are doing to help us survivors, educating women and others!!!
    –Deb

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    1. Hi Deb – you’re my favourite kind of health care professional (i.e. you’re also a patient). It’s not that I would wish SCAD (Spontaneous Coronary Artery Dissection) on anybody! It’s just that I believe your colleagues will listen to YOU more than to me or other mere patients, so your voice really matters!

      What you wrote about shocking-not-shocking hits home for me: that’s how I felt about reading Maya’s book. In fact, I had to read it in small doses to limit my urge to YELL out LOUD during most of it! I know this stuff, have been writing about it since 2009, but when you see it all laid out, chapter after chapter, it’s pretty discouraging. We have such a long way to go…

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  7. I am from Canada, but feel lucky. I had no symptoms that I knew of. In April 2017, I thought I had bronchitis, so went to an emergency clinic. Got sent to hospital, stayed overnight and was airvacced 500 miles to the Heart Function Clinic at St. Paul’s Hospital in Vancouver, BC. I had an angiogram, and it was clear, meanwhile they had me on some pills, they kept me there and a week later, they sent me for a Cardiac MRI, and came back and said I have congestive heart failure.

    I have non-ischemic cardiomyopathy, my EF rate was 17%. I continued with increasing meds. In November, I saw the EP for the first time. On Jan 6, 2018 I was implanted with a
    CRTD (Cardiac Resynchronization Therapy Defibrillator). I have had to make 5 trips to Vancouver, 500 miles each direction, but think they have done stuff right.

    I was told they wanted me on Entresto, and it was just passed to be an accepted pharmacy rep drug last week, so I will be phoning them and seeing if they can give me a prescription or if I have to come in, I am heading that way in 2 weeks.

    I plan to look for the book, because I need more knowledge. I am happy to learn from you all.
    Veronica Shortland

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    1. Hi Veronica – I just heard about that Entresto approval this week; I know many patients in BC living with heart failure had been looking forward to this decision!

      Your diagnosis must have felt surreal given that you had few if any symptoms (aside from “bronchitis”). St. Paul’s has a stellar reputation, so you’re in the right place (despite that long distance commute!) Another interesting thing about your specific case is that you had to travel hundreds of miles to get the kind of cardiac care you needed. Those of us living in urban centres (like me – I live just a few blocks from a world-class heart hospital here in Victoria!) rarely appreciate how very lucky we are compared to heart patients in small town or rural areas. I hope you’re doing and feeling well since your procedure…

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  8. I’m not in the USA so can’t enter to win the book, but am definitely adding it to my reading list!! Seems right up my alley. I wish I could say I was shocked or angered by any of the information shared, but unfortunately, with the history of conditions like “hysteria” and the continuing misogyny & sexism within medicine, I’m not. Sigh.

    But I am heartened (ha!) to see it become a more & more common topic of discourse, including even within mainstream means. 🙂

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    1. Hello Chase – yes, I too was disappointed at this “only in the U.S.” rule from Maya’s publisher. Something about shipping or customs or ? ? ? (Just wait until Trump kills NAFTA!) Still, it’s great that they’re donating copies of this book for such giveaways during the launch period …

      You’re so right: content like this is what my friend Laura Haywood-Corey likes to summarize as: “Sucks to be female. Better luck next life!” It’s maddening, but moving closer to actual mainstream discussion and – who knows? – maybe even research!

      See you on Tuesday…

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  9. I would like to win the book! It was only after 2 STEMI heart attacks and a Spontaneous Coronary Artery Dissection that I was taken seriously! That was nearly 2 years ago but I’d been complaining about angina and other symptoms since 2009. Stress tests and even an angiogram in 2013 discounted heart disease. I’ve now been diagnosed with co-morbidities of CMVD and SCAD.
    I nearly died in order to be taken seriously!

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    1. Yoiks. Reading your story makes me insane, Cathran. I just know that men would not have to work this hard to have their symptoms taken seriously if they showed up seeking medical help. Why should women have to “nearly die” before they’re believed, too?

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    2. Me too, Cathran.

      Took a cardiac arrest during challenge Cath to prove I was not just hysterical and attention-seeking. A former medical provider myself as well as now full-time patient, it amazes me that we are often not listened to. I just had a Cardiology appointment this past week and my cardio informed me my safety net of IV Nitro was no longer an alternative for bad cycles and not giving it in his facility anymore.

      Some study somewhere cites IV Nitro is not helpful for microvascular coronary artery disease or severe coronary vasospasms. Well, it helps me things get unmanageable at home. Needless to say I left frustrated.

      I was actually told to just accept my lot in life and my quality of life now to the medical team is not an issue to be worried about, in their eyes. Wow.

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      1. Arrrrgh! Kim, you may have already read this post about an Australian heart patient living with both coronary microvascular disease and spasms; she carries with her a letter for ER staff from her (very senior) cardiologist with instructions to administer IV nitro because her local hospital may or may not refuse her treatment.

        In 2017 (i.e. very recent history when it comes to the field of medicine), Mayo Clinic published this info on using IV Nitro “in patients who have been treated with other medicines that did not work well.” If your doctor has suggestions for medications that will work for you as well as IV Nitro, what are they?

        Perhaps if your doc won’t listen to you, he’ll listen to the frickety-frackin’ Mayo Clinic….

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  10. I would like to win this book because I need all the ammunition I can get in my quest to avoid my mother’s sad fate and make sure I am listened to when something is wrong!

    I am lucky in that I have developed an excellent care team, but I am in fear of emergency care and hospitalization where I would be in the hands of people who don’t know me and don’t trust what I say about my own body and symptoms…even my own history!

    Help me help myself! I promise to review and post on Amazon and Goodreads!

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    1. Thanks for bringing up an important point, Pat – I too have often felt very lucky that I have the world’s best cardiologist and best pain specialist and best GP. But I’ve heard horror stories from my blog readers of what can happen when – even with a solid medical history – patients can confront a care team of strangers in the hospital who are not as informed or supportive. Yet another reason to hug your excellent care team next time you see them!

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  11. Win this book – because it took me two years and three cardiologists before I had one who believed me about my angina – no, it was not stress! – put me on some meds and got it under control.

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    1. Bless your heart, Lisa! I love cardiac rehab programs and have written lots about them over the years – here and here and here, for example (and especially how so few physicians refer their eligible heart patients!) All cardiology societies worldwide rank cardiac rehabilitation following a cardiac event as a “Class I recommendation” which means that a procedure/treatment SHOULD BE performed/administered based on highest quality scientific evidence. In heart patients, that’s a whopping a 20-40% reduction in mortality rates with CR (that’s a better result than taking statins!) yet studies suggest that only about 20% of eligible heart patients are actually referred by their cardiologists!

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  13. WIN THIS BOOK: I would read the book and then pass it on to my previous cardiologist who kept telling me for many years that my type of pain was not angina.

    Then FINALLY 5 years ago the male-biased tests showed a small indication of a possible arterial blockage. By then I had 9 blocks as seen in an angiogram!!! I was 6 months away from death. My doctor was always very caring but ignorant about my symptoms. And he knew I have a serious family history of arteriosclerosis.

    I was fortunate to have my quadruple bypass done by a fabulous surgeon who specializes in women’s cardiac surgery. He is trying to inform other doctors about our problems.

    Now when I say I have angina they listen.

    Just five months ago I had my original angina pain. I had another angiogram by a respected and lauded doctor, who I found out after the procedure has caused problems for others, made a wrong diagnosis which I saw after reading his report! He did the angiogram without having the information about my bypass repairs!

    Getting a true answer to what is going on in my body has been difficult since they are fearful of litigation. I’ve actually had to tell them I will sign papers not to sue anyone in order to get the truth. I’m told the blockage – if and where it exists which is an unknown – is not serious. I’m not there yet! I’m having to pay for a second opinion.

    I have been telling every woman I know and meet, young and old, and for them to tell every woman they know, about what symptoms they need to look for, especially after menopause.

    I would appreciate this book to add to my knowledge and to recommend. I hope it is in the public libraries so as many women as possible can be informed.

    And yes I’ll take my BP meds before I read it.

    Thanks for all you do.

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    1. Imagine having to promise not to sue just in order to get your own medical information! Your story is such a good example of how diagnostic tests that have been developed, designed and researched on (white, middle-aged) men may not work nearly as well in diagnosing women. Good luck to you…

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  14. The following article created an epiphany moment for me. Do doctors get paid to do research when they are practicing? I have been told not, which means that an overworked/exhausted doctor may not read the public health notices or do research into a patient’s condition. They work in an abusive environment that is not supportive of their patients and they are not likely going to explain to their ill patient about how the medical system works. I also have knowledge that a lot of medical providers know very little about ‘zebra’ conditions. God help you if you are a zebra living in a horses stable.

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    1. Just to clarify your “zebra” comment for those reader who are not familiar with this common med school advice: it was first coined in the 1940s to encourage young doctors to look for the most obvious culprit when diagnosing: “When you hear hoofbeats, think of horses – not zebras”. It’s impossible for even the best and most committed doctor to have current expertise in every rare diagnosis (most of which they will never encounter at all in real life). What’s far more important is a persistent willingness to be curious and open to the possibilities of those zebra conditions.

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  15. Win this book! Not only have a survived a Widow Maker that took a week to diagnose because I was persistent that something was wrong, I also once showed up at the ER and pronounced I had Sepsis.

    “And tell me now Mrs. Merhar, why you have diagnosed yourself in such a way?” Short story is, I was septic and spent the next 4 days hospitalized on an antibiotic drip.

    But the one that infuriates me the most, I thought I had chest pain (after my triple bypass). It was discovered I had pancreatitis. The nurse decided that most pancreatitis comes from alcohol abuse and her treatment/attitude changed from caring to “you are a bum”. Two weeks later my gallbladder was removed and I felt much better.

    Don’t get me started as to what I have gone through with Graves disease and my thyroid, and that was before the internet. I am damn tired. Thankfully I have found good doctors that listen to me now. I have fired a few…

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    1. Jennifer, your examples are horrifying (especially that “you are a bum” attitude). It sounds like you have surpassed your lifetime quota of yucky medical experiences so far! Glad you have found some good doctors – there are lots out there.

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    2. There are a lot of great nurses out there BUT it’s the bad ones that do the most harm. The killer nurse from Woodstock, as an example. Nurses are dangerous in that they have enough knowledge to be dangerous – they know how the system works and its weakness, they know what to say and how to say it to achieve their means, and they have the same burdens as the rest of society: debt, exhaustion, frustration, anger, greed.

      Weak or missing control environment may result in abuse, personal injury and/or death. And the real problem is that with the current environment of nursing shortages, a lot of bad nurses aren’t going to be investigated/loss of license because its expensive for their administration.

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      1. Anne, you’re being very hard on nurses with those generalizations. There are some “bad” nurses – which is why it goes without saying that “the bad ones do the most harm” – that’s equally true for bad teachers, bad dentists, bad car mechanics. I was proud to work alongside the fine nurses I’ve known for many years, so I hate hearing broad sweeping statements like “nurses are dangerous”. And just like the rest of us, even good nurses can have a bad day (perhaps, as happened to one of my nurse friends recently, after an angry patient spit at her right in her face).

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  16. BOOK CONTEST – This is a book I think will make me cry and rage because two trips to Mayo Clinic have left me feeling even more marginalized and ignored, due to my complex symptoms and my body not having read the same textbooks the doctors read – female as well as male doctors.

    But I need it, to help me validate my experiences, make sense of them, and find a way forward – hopefully to better health, but if not that, at least to some sort of acceptance. I do hope there are suggestions in the book of what women can do to make doctors LISTEN and BELIEVE! I’ve had no luck in that department…

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    1. Hi Holly – your “cry and rage” response is exactly how I felt while reading Maya’s book! It’s like a train wreck that you can’t look away from because it’s so compelling – and so TRUE! It’s why I recommend that readers must take their blood pressure meds before reading it, and preferably lie down for a wee nap immediately afterwards…

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  17. I would like to win this book as I am starting to build my own informational women’s heart resource center to share with others.

    I started my heart journey at age 62 and am now 69. I have experienced so much frustration over the past 7 years that I feel my best path at the moment is just to learn as much as I can about why I’m not being heard and helped in some way. I suffer almost daily with angina. Sometimes I cope better than other days but it seems to be a very unknowledgeable area for the medical people I’m dealing with, whether at an appointment or in an ER setting. I’m hoping for advancement in women’s heart disease before I pass.

    Thank you,
    Carol Britt

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    1. Seven years is too long to be enduring ongoing symptoms that are not being addressed, Carol! I think your intention to become an expert in your particular medical condition is what all of us should be doing. The days are long gone when we can afford to sit passively waiting for a magical cure to come from a system that, as Maya’s book outlines, is so often based on male models of diagnostics and treatment. Best of luck to you in solving your medical mystery…

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  18. BOOK CONTEST
    I am awake here in the UK. My 40 year old daughter is sleeping in Florida. I have commented on this blog before in relation to my younger sister’s stroke at the age of 45 after being sent home from the Emergency Room in Philadelphia 3 times and told she just needed to calm down and was having ‘adrenaline surges’.

    My sister’s carotid artery dissected and she died within a month in May of 1997. I was there, I watched her getting ignored over and over again.

    Now, my older daughter, who also watched her aunt, is suffering chest pains and is being ignored in the same way that my sister was. She is being treated the same way…having the same thing happen to her…no matter what she says.

    She told me a few days ago her primary care doc is doing another referral to another cardiologist in hopes she will be taken seriously. I can, and cannot, believe this is happening. Is there a register of cardiologists who take women seriously. I would like to know of some in Florida right now.

    You are right — it is the ‘hysteria’ thing…the mental block…the failing to listen.

    As you review Maya’s book here (which I have just ordered on my Kindle here in the UK thanks to your blog post) I am entering the contest on behalf of my daughter in Florida, for her, as her mother.

    She IS a highly ‘educated as a self advocate and a registered dietitian’.

    I had an idea a few days ago to send this cardiologist in Florida who dismissed her, your book, which I have read and use in the workshops for women that I teach here in the UK.

    My sister – as a diagnosis of exclusion ‘guess’ finally, was said to have a connective tissue disorder…in her case: Marfan’s syndrome because she was very tall.

    My daughter is not tall but I now know that connective tissue disorders are a possibility in our family. She told the cardiologist this and he just dismissed her as ‘hysterical’. She has had the nuclear stress tests and the ultrasounds…but women often need someone who understands hormonal changes in perimenopausal women and who are skilled in electrophysiology.

    I am far away from her geographically…but we speak on the phone every few days…she now subscribes to your blog, Carolyn, and reads it.

    I am a US citizen…but I live in the UK. My daughter is a US citizen and lives in Florida.

    I know she could do with this book. I see it is sold out here in the UK as far as a hard copy goes.

    Thank you Carolyn, for all you are and do.

    Isabella

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    1. Thanks for your kind words, Isabella. Such a tragic story about your sister…. I’m honoured to hear that you’re using my book in your menopause education.

      I hope your daughter is able to connect with a cardiologist who takes her symptoms seriously.

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  19. I would give the book to my son, a 31 year old medical school student, so that he can continue to spread the message of gender bias in cardiac diagnosis…..something he saw and experienced first hand during my own emergency cardiac experience and “surprise” double bypass surgery 3 years ago, when I was 62.

    He, and others in his generation are wonderful advocates.

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    1. McKenzie, I’m sure that your own cardiac crisis had an indelible effect on your son at the time. He’ll be a better doctor because of that experience. I’d love to think that med students like your son will be thinking and acting differently than the generations preceding them when it comes to women’s unique medical issues!

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      1. Carolyn, I forgot to add the words “Book Contest” to my original post.
        🙂 I thank you for all of the incredible work you do to bring attention to women’s heart health.

        I believe I could help here in Western North Carolina and had hoped to attend a conference at the Mayo Clinic; It would seem, however, that the hospitals here are not sponsors of this particular program. It would be nice to find a way to to help women outside of large cities, too. I have lived in Atlanta, New York City and Rochester NY; the soft mountains of a more rural America still have women with heart health needs.
        Thanks again!
        McKenzie

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        1. Hi again McKenzie – not to worry: even without the words Book Contest, I knew you wanted to enter the draw, so you’re in! You raise such an important point about women living in small town or rural communities – where there IS no hospital, or no hospital with cardiac care available, where you’d need to be airlifted by medivac to the nearest big city heart hospital, often HOURS away. I will never take my ‘big city’ cardiac care for granted – wrote about it here.

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  20. My pain is always in my back, usually written off as indigestion. My mother died at 57 of heart disease, I was a child and so I have trouble thinking about her as it’s painful to recall her.

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