.
Before my cardiac symptoms forced an early retirement, my entire adult career was spent in the field of public relations, in corporate, government and non-profit sectors. Which is to say I’ve had decades of firsthand experience speaking publicly on behalf of all kinds of people. I was paid to both defend the indefensible stupidity of certain industry presidents, and also to pitch engaging human interest stories to help promote good causes.
.
But it was only when I started voluntarily speaking out on behalf of other female heart patients that I encountered any real backlash – and that came from the most unlikely sources. . .
.
My favourite example was the anonymous cardiologist who reviewed the draft versions of my book before publication (A Woman’s Guide to Living With Heart Disease, Johns Hopkins University Press). Reviews were overwhelmingly helpful and positive – except for two chapters.
.
Chapter 3 is called “Diagnosis & Misdiagnosis”. The review comment for this chapter was one line:
.
“Sounds like doctor-bashing to me.”
The response to Chapter 7 was more directive:
“Irrelevant to female heart patients – should be removed.”
Aside from the unintended irony of a cardiologist telling a female heart patient what is or is not relevant to female heart patients, the reality is that Chapter 7 was the most patient-centric chapter in the entire book, covering psychosocial topics like “Looking For Meaning in a Meaningless Diagnosis“.
.
I had to enthusiastically lobby my JHUP editor to keep Chapter 7 (essentially, against doctor’s orders) – but happily, both original chapters remain in the book as submitted.
.
But both review comments reveal what I’d been observing since 2008, which is that the differences between how I perceive living with my diagnosis and how a physician perceives that same diagnosis can often be significant. Many studies confirm this common disconnect. (See also: A Patient, a Caregiver and a Doctor Walk Into a Bar).
.
It’s why doctors can dismiss a patient’s lived experience as “irrelevant”.
.
It’s why even the single word “misdiagnosis” can feel like a doctor-bashing insult to some doctors.
.
I don’t ever claim to speak for all women living with heart disease – any more than one physician speaking onstage at a conference can claim to speak for all physicians. I typically write and speak about what becoming a patient can feel like, and about what I wish I’d learned about surviving a misdiagnosed heart attack.
.
Back then, I applied and was accepted for the 2008 patient advocacy training called the WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic in Rochester, Minnesota – a truly life-altering experience, day after day, with the “rock stars of cardiology” speaking onstage, generously sharing their important knowledge of women’s heart disease.
.
My first naïve reaction after graduating from my Mayo training (in a surreal state of mind that cardiologist and founder of the Mayo Women’s Heart Clinic Dr. Sharonne Hayes has called “gunning for bear”) was this:
.
“What can I do now to help other women avoid suffering what I went through?”
.
When I returned home from Rochester, I started doing free public presentations to other women on what I’d just learned at Mayo about what’s known as the cardiology gender gap. I launched this blog the following year. Then Johns Hopkins University Press approached me about writing my book based on my Heart Sisters articles – which they published in 2017.
But I soon learned that the more I spoke or wrote about this gender gap, the more pushback I encountered – not from women, but from their physicians. When I was invited to speak onstage at my first medical conference audience, for example, one physician flat out said:
“I listen to patients all day long in my office. Why should I have to listen to patients when I go to my medical conferences?”
.
In 2014, when I wrote a blog article about Harvard researcher Dr. Catherine Kreatsoulas and her study on the differences in how men and women communicate their heart attack symptoms in the E.R., a New Jersey Emergency doc named Rick Pescatore responded with a Twitter meltdown.
.
In a rapid-fire avalanche of angry Tweets (must have been a slow morning in his E.R), he attacked my “particular style of sensationalism” – as well as accusing me, each time in separate Tweets, of myopic, misleading, unhelpful, inaccurate, unfair, uninformed fear-mongering.
.
When I politely responded to each attack with links back to the original Harvard research paper so he could read it himself, his Tweets blew up again – so vicious and so personal that I wondered if he was actually aware that Twitter comments are public.
.
He didn’t want to read what Dr. Kreatsoulas had written in her study. What he really wanted, of course, was for me to shut up and go away.
.
That’s what busy, overwhelmed people in traditional positions of authority want. This kind of response from what behavioural scientists call the “dominant group” is not surprising. For example, a dominant group holding power in a given society (e.g. physicians) can feel predictably disturbed by those who have historically had little power to dare question that dominance (e.g. patients).
.
I learned from that experience that attacking a lowly heart patient who’s writing about the misdiagnosis of female heart patients is apparently easier for a bully than attacking the Harvard researcher she’s quoting.
.
I am concerned (some might say obsessed) about the overall lack of mandatory reporting of diagnostic errors in medicine. The field of medicine is alone among professional workplaces in that, when something goes wrong for the client, the official kneejerk response is to refuse to talk about it. See also: Mandatory Reporting of Diagnostic Errors: Not the Right Time?
.
What happened to me in 2008 should NOT be happening to other women, and yet we know that this cardiology gender gap continues – despite the growing efforts of many cardiologists leading the fight to narrow this gap. The stats on women’s cardiac misdiagnoses are grim. As the U.K. cardiologist Dr. Chris Gale described in his study of nearly 600,000 heart attack patients followed over the course of nine years:(1)
.
“This research clearly shows that women are at a higher risk of being misdiagnosed following a heart attack than men.”
.
And since women are far more likely to be the ones misdiagnosed (and worse, under-treated even when appropriately diagnosed), we need to be the ones speaking up about this important issue. See also: Same Heart Attack, Same Misdiagnosis – But One Big Difference“
As I wrote in my 2018 “Skin In The Game” blog post, some physicians may feel annoyed by continuing reports of women’s higher misdiagnosis rates, but I need to continue writing and talking about them, and also supporting those physicians, researchers and heart patients who are devoted to raising awareness of such an unacceptable imbalance in women’s heart health.
Sue Robins is a Vancouver patient advocate and popular author (“Bird’s Eye View” and “Ducks In a Row: Healthcare Reimagined) who knows about banging her head against a wall. Sue advocates for families of children with Down Syndrome like her teenaged son, Aaron, and writes about health care generally and her own experience as a breast cancer patient specifically.
Like me, she’s also been called names by those who would like her to shut up and go away, too: difficult, emotional, hysterical (that last insult directly from the Premier of British Columbia).
Sue’s recent compelling essay “Telling Your Truth” captures what can happen when patient activists start telling the truth to those who don’t want to hear the truth:
“Feeling awkward and unliked is a necessary side-effect of advocacy. The more you speak out for something new, the more people will push back against you.”
.
Those of us aiming to reduce systemic disparities encounter not only the hierarchy of medicine, but the reality that the only people who can improve the system are basically running the system. The end-users (patients and families) are routinely lauded as “very important to us”, of course, but are in fact mostly powerless outsiders, no matter how many hospital Patient Relations Department surveys are submitted – and then ignored. We see this every day.
.
As Sue Robins urges us:
.
“I have to believe that stories matter, that my story matters, or I wouldn’t continue on. As psychologist Mary Pipher (author of many books, including Reviving Ophelia) says, if we share the truth of our lives through stories, it might just help open people’s hearts, including the hearts of government officials and bureaucrats.
.
“Change will happen only when our governments and systems become accountable to us, the people. Keep beating on your drum and I will keep beating on mine.”
♥
1. Wu, J., Gale, C. P., Hall, M., Dondo, T. B., Metcalfe, E., Oliver, G.,West, R. M. (2018). “Impact of initial hospital diagnosis on mortality for acute myocardial infarction: A national cohort study.” European Heart Journal: Acute Cardiovascular Care, 7(2), 139–148.
.
Q: Why should Sue and I (and other patient activists) keep “beating on our drums” even when others won’t listen?
♥
NOTE FROM CAROLYN: I wrote more about how women advocate for other patients in my book “A Woman’s Guide to Living with Heart Disease“. 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).
Heart Sisters 
Hi Carolyn,
It’s been one year since I accidently found your book, when searching the web looking for an answer as to why my life had been turned upside down. I felt that my new normal must have a greater purpose.
I read your book and it was as if you were speaking directly to me. I hung on every word, and felt so comforted to know that all the emotions I was feeling were experienced by many women who face living with heart disease.
Now a year later I have become a WomenHeart Champion, thanks to you. I am focusing on support, education and advocacy for women living with and at risk for heart disease. I have started a Facebook group called JoAnn’s WomenHeart Master Class and wanted your permission to promote your book and Sunday Blog. I want to be respectful of your work and follow proper etiquette.
Please let me know your thoughts. How should I suggest the ladies buy a copy of your book? Can I post a photo of the book, and can I use your blogs on my group page as conversation starters?
Thank you for showing me my purpose and for sharing all your pearls of wisdom.
Respectfully,
JoAnn Gerardo
LikeLiked by 1 person
Congratulations JoAnn on becoming a WomenHeart champion! That’s such fantastic news – I hope you enjoyed every minute of your training.
Great news about your Facebook page, too. Yes, of course you can mention my book and/or blog as you see fit. Thank you for that! Here’s the standard blurb I use about my book to share with your group: “A Woman’s Guide to Living With Heart Disease” by Carolyn Thomas, published by Johns Hopkins University Press. Available at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – https://www.amazon.com/Womans-Guide-Living-Heart-Disease/dp/1421424207 or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price) – https://jhupbooks.press.jhu.edu/title/womans-guide-living-heart-disease/reviews
Here’s a link to a high-res (good quality) picture of the book cover that you can use: https://jhupbooks.press.jhu.edu/public/thomas_1.jpg
You’re very welcome to quote sections of any blog articles here as conversation-starters – if you do, please include a link back to the original blog post.
Thanks so much for your kind words, JoAnn – I’m sure glad you found my book a year ago! Take care, stay safe and best of luck to you with your patient advocacy future…
xoxo
C.
LikeLike
Carolyn, you are my hero. I have been reading you for years. Blog and book. You help me remember that I am not crazy. I’ve had 2 misdiagnoses. 3 MI’s. The last one was micro vessel and I just about didn’t make it or so I felt. So hard to recover… but here I am.
Working PRN and living independently. Well, me and a bucket of meds. You are on the right path always.
Thank you!
Randi Beth Albrechtsen
LikeLiked by 1 person
You are NOT crazy, Randi! One of the most common reactions I’ve observed among my readers is a sense of relief expressed when women find out “I’m not the only one!” Even among distressing symptoms or dismissive care, this can be such a reassuring scenario – to know you’re not alone. Your own ability to live independently, and to work as you are able to is such a good sign – and that bucket of meds likely helps a lot too!
Thanks for your comment – I appreciate it. Take care and stay safe. . . ♥
LikeLike
Thank you Carolyn for that wonderful strong drumbeat that you send out so well. I heard it here in Northern Ireland.
I sat up straight when I started to read it today, then I got angry and straightened myself even more. It’s like banging your so knowledgeable head against a wall, and I feel your frustration when you think of all the great educational work you do to enlighten everyone seems to be needed all over again.
Don’t be disheartened, those who are meant to hear your message hear them, as Jill wisely said a few comments back. It goes into the Sub-Conscious mind. We have a wonderful young lady Cardiologist in my home town hospital; everyone whom she deals with praises her for her lovely respectful manner, she is like a breath of fresh air!
Carolyn thank you for beating the drum!
Brenda
LikeLiked by 1 person
Hello Brenda – and all other readers from Northern Ireland!
Thanks so much for your kind words. I am always thrilled to hear about respectful young cardiologists like your local doctor. This is what we should expect from all health care professionals, isn’t it?
Take care, and stay safe in Northern Ireland. . . ♥
LikeLike
Powerful and spot on. It is not unusual for women’s concerns to be dismissed, written off to female anxiety, labeled as a worrier. Asking many questions because you want to be educated is sometimes viewed as questioning the doctor’s credentials, their reputation, but probably more their ego. I will admit, the limited time doctors are given for patient appointments doesn’t help.
God bless you Carolyn, as I’m telling all my girlfriends, “strong is the new pretty.” Our young girls growing up need to be told every day to be strong, be smart, more often than they hear “oh you’re so pretty.” Beauty fades, or shines differently as we age, so we must build on being intelligent and resilient.
Paula
LikeLiked by 1 person
Hello Paula – I agree with your observation that time restrictions during a doctor’s appointment make patient questions far more challenging.
I know that I’m acutely aware of this constraint when I’m in front of my doctors. (See Charlotte’s comment below for some sad examples of her own doctors who have basically cut her off, essentially saying ‘hurry it up’ in mid-conversation). There must be more civilized and gentle ways of communicating to a sick person up front how much time you have set aside for her, how much time is remaining, etc. I often start an appointment by saying to my own doctors, “I know you must be rushed for time today. . .” which somehow seems to elicit a comment like “No, no, it’s okay. . .”
LOVE that “strong is the new pretty!” I’m already using it on my 5-year old granddaughter Everly Rose. Never too early to start teaching girls that being passive and quiet rarely gets us what we really need. I wrote about this issue here: “Is Being Nice Hurting Women?“
Speaking of teaching our girls this lesson, did you see this recent (irreverent, spicy language) essay called “Dear 8th Grader“ by Mona Eltahawy? I wish somebody had sent me this letter when I was in the 8th grade.
Take care Paula – stay safe out there. . . ♥
LikeLike
Yet another fine post on a topic that is, unfortunately, ever green.
All too well do I know misdiagnoses, lasting damage, and unnecessarily prolonged suffering. Whenever possible, it is worthwhile to “shop” for a doctor who actually listens.
Thank you for your informed, persistent, and good-humored advocacy.
LikeLiked by 1 person
Thanks so much for your kind words, Kathleen. I know that you certainly DO know of misdiagnoses, damage and suffering at the hands of medical professionals. (READERS: I wrote about Kathleen’s own dramatic story here – including how she managed to get the misdiagnosis of “anxiety” removed permanently from her medical records).
Where I live (west coast of Canada), we happen to currently have a severe shortage of family physicians. The luxury of shopping around for a GP is an unlikely possibility here. Instead, we live in fear that our GP will move, retire or drop dead. . . Talk about anxiety!
Take care, and stay safe out there. . . ♥
LikeLike
” … doctors can dismiss a patient’s lived experience as “irrelevant”.
Right there. That’s why your drum-beat matters. It’s imperative that you (we) change this dynamic.
I’ve definitely noticed a shift in recent years on how many doctors interact (US healthcare) with me — as the next generation of doctors are treating me. They are more likely to introduce themselves, and many at least go through the action of hearing me. However, when push comes to shove, all too often they may be hearing, but they are not actually listening.
And I don’t think they know the difference. They honestly believe that by giving me the time to say my piece, they’ve given patient-centered care. But in the end, they have their clinical response and what that may or may not actually mean to me or impact my quality of life really isn’t in their purview.
I have so many examples of that.
My years-long pursuit of seeking a diagnosis and relief from the pain of fibromyalgia.
The ER cardiologist who cut me off as I was relating the progression of symptoms to tell me that he didn’t want to hear all of that, but just tell him what I felt right now.
The surgeon (who had never met me, but was talking to me over the phone about a referral to him) that he didn’t like doing hysterectomies on women who just want them… I had a serious condition, difficult to diagnose, and very painful.
The most recent example of being dismissed of my “lived experience” being irrelevant is not about diagnosis, but about treatment affecting my quality of life. I’ve been on dialysis for the last 8 months and, having done this once before in my life, I want to train for home dialysis. There have been quite a few things standing in my way of this goal (physically) but now I’m ready.
When talking to the Dr. about getting started, she told me that I’ll have to wait because they are short-staffed and there are too many other patients in line ahead of me. I get that. I really do. But, I’m also very sad and frustrated, as I truly dislike the in-center experience. Her response to me was that I should be happy that I have a spot at the center.
Huh? So tone deaf to what I was trying to say. Yes, I’m grateful to have dialysis available to me, but it’s not like I’m doing the happy dance when I go. I just want a more liveable way to do this.
You and Sue are definitely on the right path. Tell your stories, over and over again, to get that message out that doctors need to look beyond our physiology and see our whole selves.
LikeLiked by 1 person
Oh, Charlotte – so many good points here! It struck me that – when you were explaining your dialysis story: how little practical sense it makes for patients like you to linger on a waitlist for home dialysis. Even if staff had zero interest in your personal preferences, you’d think that fast-tracking this option would save both money and staffing resources longterm compared to in-hospital dialysis?
And worse, a “good” patient should be suitably “grateful” for whatever you get. Basically, another example of “shut up and go away.”
That list of your specialists made me cringe. It felt like dismiss, dismiss, and dismiss, one after another.
Lastly, I’m hoping you’re wrong about this newest crop of doctors who are politely introducing themselves and letting you talk (all good!) but revert back to a clinical response that ignores your quality of life just as significantly as the ‘old boys’ in the generation practicing before them. I hasten to add that of course we have many very experienced physicians (neither “old” nor “boys”) who literally wrote the book on doctoring (e.g. pioneer cardiologist Dr. Bernard Lown who wrote “The Lost Art of Healing: Practicing Compassion in Medicine” or Dr. Victor Montori at Mayo Clinic who wrote “Why We Revolt” – a must-read little book on what he calls Minimally Disruptive Medicine – which calls for nothing less than a patient revolution in transforming our “industrial healthcare system”.
I only say that I hope you’re wrong because sometimes I fear I must wait until the last of the dinosaurs out there die off or retire, thus I place a lot of my hopes and dreams for truly patient-centred care on our current batch of med school students!
Take care, and stay safe. . . ♥
LikeLike
As an RN who also advocates for complementary, non-medical healing methods, I have been laughed at, dismissed and ignored on many many occasions.
Here is my philosophy. When advocating for change, based on Truth, we must know that what we are doing is of value even if we do not live long enough to see the results.
Each time we have an opportunity to inject Truth into a situation, we take it. Because even those that yell the loudest or laugh the hardest have had the seeds of change planted.
You may think they aren’t listening but their sub-conscious always hears. Once the truth is on file in someone’s sub-conscious it has the chance to be accessed and acted upon at any given time.
So, the journey is ours and we remain enthusiastic but unattached to the outcome.
LikeLiked by 1 person
Hello Jill – thanks for this important reminder! I seem to frequently forget this lesson (especially when those who “yell the loudest” are doing their yelling directly at me!) – but forgetting is what the loudest are counting on, isn’t it?
Remaining “unattached to the outcome” of our efforts is indeed the most challenging part for me personally. For example, last year’s American Heart Association survey on women’s awareness of heart disease risks and symptoms revealed that women are actually far LESS aware now – despite expensive Go Red For Women campaigns and books and blogs and even a nationally designated Heart Month every February to raise this awareness – than they were a decade ago.
These results had a profound effect on me. I felt utterly deflated. Any speck of enthusiasm about doing my part in helping to raise awareness that I may have had up until then seemed squashed forever.
Clearly, I want what I want, and I want it now! Not very evolved, but there you go. . .
Take care, and stay safe. . . ♥
LikeLike
Carolyn, thank you for writing and speaking out on this topic. This is quite a triggering post for me to read as it brings up a lot of anger and frustration for me.
My mother’s symptoms of a brain tumor were dismissed as depression and brain scans misread, leading to misdiagnosis with fatal consequences.
It’s something that is still too painful for me to engage with either in writing or speaking, so I am beyond grateful for advocates like you who continue to challenge the medical profession and push for more open disclosure.
LikeLiked by 1 person
Hello Marie – I’m so sorry about the tragic circumstances that led to your mother’s death. What a nightmare for her, for you and for your whole family to endure. . .
The entire purpose of implementing mandatory reporting of diagnostic error is to help prevent what happened to your mother and to other mothers long into the future: to document a misdiagnosis as soon as it’s first discovered, to review the circumstances leading up to that misdiagnosis, and to implement system-wide improvements (e.g. scan interpretation skills, safety checklists, whatever is identified). It’s NOT about punishment or blame, as many doctors fear, but it’s about improving an environment that supports patient safety.
Take care, and stay safe. . . ♥
LikeLike
If “misdiagnosis” and the other problems you mention were bad before the covid-19 pandemic, believe me, they are much worse now.
Prime amongst them is that docs don’t have time to discuss any symptoms that aren’t life-threatening.
The spasms caused by low CFR (coronary flow reserve) and “highly significant CMD (coronary microvascular dysfunction)” are worse?
Doc: Yawn.
You’re putting the dys in dyspnea (shortness of breath)?
Doc: Double big yawn.
Me; [unprintable] ;))
LikeLiked by 1 person
I worry about that too, Sandra – based on what we learned during the first wave of the pandemic. Patients were reluctant to seek urgent care at hospitals or clinics because
(1) they were afraid to catch the virus from other sick people there, or
(2) they didn’t want to burden already over-burdened healthcare teams fighting this deadly virus.
And we also got the very clear message early on through wholesale cancellations of already-scheduled procedures and surgeries that the COVID-19 patient was a far more important patient than any of the rest of us were. After noticing that patients weren’t calling 911 – often with deadly results, healthcare professionals tried suddenly shifting gears to encourage us all to seek medical care as usual (those “an emergency is still an emergency” public awareness campaigns).
But if we feel dismissed when we do seek care, or feel somehow obligated to mention only life-threatening symptoms that deserve as much attention as COVID-19 does, will patients still be able to trust that the care that awaits us will actually help us?
Take care, stay safe. . . ♥
LikeLike
Brava Carolyn. As always your insights and beautiful writing inspire.
Thank you! xxoo
LikeLiked by 1 person
Thanks so much Denise for your kind words. Take care, and stay safe. . . ♥
LikeLike