by Carolyn Thomas ♥ @HeartSisters
A woman in one of my Heart-Smart Women presentation audiences told me about a conversation she overheard in our local Emergency Department, in which the physician said to the (male) patient in the bed next to hers:
“All of your cardiac tests came back ‘normal’, but we’re going to admit you for observation just to make sure it isn’t your heart.”
That story tells us that (unlike your average woman – i.e. me! – with cardiac symptoms alarming enough to propel her to seek emergency care, but unlucky enough to have tests that look “normal”), a man who shows up with both cardiac symptoms and “normal” test results does not need to fight to be believed.
That story is about yet another man being routinely admitted for observation (as current cardiovascular care treatment protocol recommends). It’s also about a man who, when he tells Emergency personnel he’s worried that his alarming symptoms might be a heart attack, he fully expects that they will believe him.
On the other hand, we know (as described here, here and here, for example) that once a woman with cardiac symptoms produces “normal”-looking cardiac diagnostic test results, most physicians will immediately move on to suggest a non-cardiac reason for her complaint. Misdiagnosis options can include anxiety, stress, depression, indigestion, pulled muscle, attention-seeking, asthma, thyroid or gall bladder problems, and of course the very popular catch-all misdiagnosis of menopause.
When I was sent home with an acid reflux misdiagnosis (coincidentally from the same Emergency Department where my audience member had overheard that male patient being admitted), I did not realize at the time that my experience of having my “Hollywood heart attack” symptoms dismissed was not at all uncommon for female heart patients. See also: The Heart and Stroke Foundation’s report, Women’s Hearts are Victims of a Broken System That is Ill-Equipped to Diagnose, Treat and Support Them
And if I could be misdiagnosed despite textbook cardiac symptoms like central chest pain, nausea, sweating and pain down my left arm because my initial tests came back “normal”, what hope can there be for women presenting with vague cardiac symptoms along with “normal”-looking diagnostic tests?
As Maya Dusenbery explained in a USA Today article last year called Why Women Struggle to Get Doctors to Believe Them:
“This tendency to brush off women’s symptoms is rooted in the colloquial sense of hysteria today, in terms of seeing women as more emotional and dramatic. But women aren’t being treated as hysterical in the modern meaning, but hysterical in the old meaning of hysteria – as this disease that became understood as a psychogenic illness.
“I was surprised by how much silence around these dismissive experiences there often is. Women either internalize that dismissal or, even if they recognize it as problematic and push back individually, attribute it to just bad luck or they think they could have done something better to advocate for themselves.
“I hope that the medical providers see that this problem is more widespread than we realize.”
Dusenbery is the author of the highly recommended book called “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick“. She suggests that we are starting to see younger female patients speaking up about these kinds of dismissive experiences, adding:
“It’s often very shocking and surprising for women, at least women who have a degree of privilege or have been raised with the expectation that their accounts of the world – let alone their own bodies – will be trusted.
Jennifer Brea is one of those young women who likely shared that expectation that, when her alarming physical symptoms worsened over the course of a year, she would of course be believed by the medical professionals she sought out for help.
She is the creator of the documentary film Unrest, about her own medical condition, generically described as chronic fatigue syndrome/myalgic encephalomyelitis (ME for short). There is no test, there is no cure, and it mostly affects women.
Brea once told an Inflection Point radio interviewer that, when she first sought treatment for her distressing symptoms, “doctors would run a wide range of tests and do investigations. And then when they couldn’t find anything, it always turned back to, ‘Well, maybe you’re just really stressed. Maybe you are depressed. Maybe there’s nothing wrong at all. Maybe this is all in your head.’
“I started to suspect as I was trying to get a diagnosis that I was being taken less seriously because I was young and female.
“There was a strong expectation that because of my youth, I was supposed to be well, and nothing could be wrong. But that also because of my youth and my gender, that I was just more prone to be kind of anxious and worry about my body and what I was feeling.
“And I think there’s just this sort of unspoken expectation that women are more fragile and more achy, more whatever.”
More “whatever”?! Why would Jennifer Brea’s physicians be more likely to dismiss her alarming symptoms than to believe her?
Why don’t doctors believe women?
To help me understand why this might be happening, I looked to Dr. Danielle Ofri, author of What Patients Say, What Doctors Hear, in which she explained what she called the “internal bias“ that she suspects may be behind this failure to believe women.
Patients can experience a physician’s internal bias, as Dr. Ofri suggests, when physicians don’t take their complaints seriously. Doctors may fail to see them as individuals. And doctors aren’t immune to their own internal biases, and may make assumptions about their patients.
” When a patient is known for being a complainer, I may mentally downgrade what that patient has to say, dismiss it as just another complaint, and think that there’s nothing really wrong.‘.“And of course, that’s a terrible thing to do because people who have lots of complaints also have real illness too, and you can miss something.”
Is there a solution to this scenario of having one’s medical issues “mentally downgraded”?
Internal biases are so deeply rooted that they can be difficult for healthcare professionals to overcome, Dr. Ofri says.
But it might help for doctors to pause and consider what it’s like to be the patient when they find themselves making flash judgments or thinking, “Oh, no! There’s that patient.”
A tactic Dr. Ofri now recommends to her colleagues it this one:
” Imagine it’s your grandparent who doesn’t speak the language, or who doesn’t have that much education and is struggling to find the right words.”
Patients can also do something.
Dr. Ofri suggests that patients can clearly point out when they feel their doctors are making assumptions about them:
“It’s okay to stop [your doctor] and say, ‘Hey, I’m not sure you’re really hearing what I’m saying,’ or, ‘I feel like you’re jumping to conclusions about what I’m saying before I’ve had a chance to explain.’ “
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Q: Have you had the experience of not being believed during a serious medical crisis?
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NOTE FROM CAROLYN: I wrote much more about being believed – or not – in my book “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
See also:
Skin in the game: taking women’s cardiac misdiagnosis seriously
Why doctors must stop saying: “We are all patients”– my guest post in the British Medical Journal (BMJ)
“It’s not your heart. It’s just _____” (insert misdiagnosis)
Misdiagnosis: is it what doctors think, or HOW they think?
Seven ways to misdiagnose a heart attack
Misdiagnosis: the perils of “unwarranted certainty”
Cardiac gender bias: we need less TALK and more WALK
Unconscious bias: why women don’t get the same care men do
When you fear being labelled a “difficult” patient
The sad reality of women’s heart disease hits home
How can we get heart patients past the E.R. gatekeepers?
When doctors can’t say: “I don’t know”
Misdiagnosis: the perils of “unwarranted certainty”
When your “significant EKG changes” are missed
The ’18 Second Rule’: why your doctor missed your heart disease diagnosis
Heart attack misdiagnosis in women
♥
Heart Sisters 
Women also have a higher tolerance for pain. We are accustomed to monthly menstrual cramps, labour pains….Men will complain more about pain and discomfort.
Interestingly, there is research indicating that having a shorter height is also a risk factor for heart disease.
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I believe that too, Melissa. Have you ever seen this hilarious “Man Cold” video from the UK? It’s funny because it’s so true (albeit a pretty over-the-top parody of what most women already recognize!!)
I’ve seen studies about short stature being linked to higher risk of heart disease, but I’ve been unable to tell if the studies included women or not. (Your link was dead, so I replaced it with another link to a study that suggests a 50% higher risk!)
Thanks for sharing your perspective here.
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The video is hilarious. Calling the ambulance for a “man cold”… LOL
The link is not dead though.
I think the server was just busy/ overloaded at the time when you checked it. This is essentially a summary of the study on stature and CHD.
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It wasn’t “overloaded”; it’s a commercial site that requires readers to “opt in” for “reports and special offers” before the study could be opened. But this study’s easily available online via a simple Google search without having to sign up for any ‘special offers’ first…
I don’t support links to any commercial sites like this on my blog.
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I was surprised to learn, after my heart attack, that in the midst of my heart attack my troponin level was 6. Had I not arrested in the ambulance I am sure I would have been dismissed. Fast forward 5 years to this past January and I had to talk my cardiologist into doing a heart Cath after suffering through chest pain for a year, taking extra Nitro almost every day.
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Good grief, Marlene. I can’t help but wonder if a man would have to suffer chest pain for a YEAR before being listened to…
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Just a comment about wondering if you would be strong enough to interrupt a doc that was not listening…
It is a dilemma … will they seek revenge because we hurt their ego? And we are at their mercy and in such a vulnerable position? A truly good doctor will not be offended, if he or she does seem hurt, offended, or lashing back in a negative manner …. ask for a new doctor or second opinion.
I have had to interrupt a young anesthesiologist before a heart ablation because he was not listening to a crucial piece of information( I lived to tell about it). At the time the fear I might get injured was larger than the fear of his retribution. I also have given my PCP, Cardiologist and family strict orders that a particular cardiac surgeon is never to touch me.
It’s hard to do but we need to do these things to make things better not just for ourselves but for those who follow us into the health care system. Just like the old boys network in politics needing to be broken up…. the old boys network in medicine needs to be broken up.
FYI my Cardiac Cath today was clean, no new stents needed! Yay!
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First, great news about your cath today, Jill!
I don’t think fast enough to wonder about “revenge” – but there are studies that do suggest that if a physician considers you to be a “difficult” patient, treatments and outcomes do suffer. I’m positive that these reactions aren’t deliberate or malicious – just a reflexive unconscious response.
Even when I wasn’t a patient myself (e.g. three of us friends spent 5 1/2 weeks sitting vigil in rotating shifts at the bedside of a severely ill friend a few years ago), I observed many alarming things. Our friend had no family nearby, and we would report her daily status by phone to her out-of-town relatives every day.
All three of us immediately realized that her care was not always appropriate, which was when we decided we really needed to stick by her side to help her out. (Her illness had caused total blindness but we’d arrive to find her meal tray for example placed on the over-bed tray that she couldn’t see, well out of reach, with tightly sealed coverings she could not open even if she could have seen them). But we were highly sensitive about how risky it was to speak out as it WOULD affect the care that nurses and docs would be providing.
We didn’t interpret this as “revenge” for speaking up, but merely human nature (we like being around pleasant people, and we don’t like being around those who are complaining).
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Hi Carolyn,
This reminded me of when I went to the OR thinking I was having a heart attack. You read my book, so you know how that all turned out. But gosh, I remember feeling not believed at first about my very real chest pain. The doctor patted my legs and in a rather condescending way said, aches and pains happen at our age.
So what? I was in the ER for good reason, for crying out loud. And I wonder if he would’ve said that to a man.
I can’t tell you how many times my readers have confided that they don’t feel listened to by their doctors. For example, endocrine therapy is a common treatment for hormone-driven breast cancer, and the side effects of the drugs can be quite nasty. Women hesitate to report them sometimes for a lot of reasons (some are embarrassing). And many times, women feel like they aren’t believed when they do report them. Doctors too often brush them off. So, it’s a dilemma.
And young women are sometimes told (when they report something) that they’re too young to get breast cancer, so don’t worry, it’s nothing. Just like Jennifer Brea reported – you’re supposed to be healthy when you’re young. True, but obviously, this isn’t always the case.
It’s terrible that so many women experiencing heart attack symptoms (and symptoms of other conditions as well) are still not being taken seriously, are misdiagnosed and sent home, as you were.
Love Dr. Ofri’s suggestion to stop a doctor and say, you’re not listening. But doing that when you’re sick, scared and vulnerable isn’t easy.
Great post. Thank you.
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Hello Nancy – thanks so much for weighing in here. You’ve brought up so many good points. “Aches and pains happen at our age”!!?!!! I simply cannot imagine that docs are that openly dismissive of their male patients, I just can’t.
Another really important thing that I’ve often thought about a lot is whether or not (even having experienced being misdiagnosed myself) I would be brave enough or strong enough to take Dr. Ofri’s wise advice to interrupt a doctor who was not listening to me if that happened today.
Trouble is, during that moment, we’re sick and scared and at our most vulnerable. I’d like to trust that knowing what I know now, I would indeed speak up immediately, but I know for sure that it is NOT easy, as you so accurately point out.
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Great article! For a long time women’s health has been ignored and trivialized. Girls are taught to accept pain and discomfort as a normal phenomenon from a young age. From menstrual discomfort to mental illnesses to cardiac ailments, it’s time that women are taken seriously by doctors. It is integral for future stability in society.
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Thanks Angelina – Maya Dusenbery’s book covers that fascinating (and scary) history of women’s health care. Well worth a read (although in the review I wrote for this book, I warned: “Do NOT open this book unless you have already taken your blood pressure meds!”
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I’m one more of the “not believed” women. A petite 100 lbs and healthy numbers, but a horrific family history of cardiac death.
Coronary microvascular disease as well as 5×50% coronary blockages only found after I threatened a male cardiologist to confirm by a cath procedure as my sisters both needed for diagnoses. All other tests were normal of course. Chest pain, back pain, dizziness and shortness of breath…and I was sent to drive myself home twice by my internist and twice by my male cardiologist. Internist actually yelled at me when I accused him of a gender bias…told me it was ME who had the bias.
Changed to a female cardiologist. I am now doing well on meds and living a new normal until I need to run the gauntlet of disbelief once again.
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Glad you found a good cardiologist, Kris.
In my experience, the quality of cardiology care is not unique to female doctors (there are brilliant and caring male cardiologists out there – I know, because I have one of them! – and there are dismissive female docs out there, and vice versa). Often I hear women say that they only want another female to treat them, but I think it’s important to assess the overall quality of whoever (male or female) is providing care. A good doctor is a good doctor!
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Way too often I have diagnosed myself correctly, only to have docs smile tolerantly and say, “But that would be very unusual/rare.” Perhaps so, but I still had/have it, and 100%.
I don’t have MD after my name, and it took years to get appropriate diagnosis and treatment.
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Thanks for this, Kathleen. It is an outrage to think of women waiting years – YEARS! – for an appropriate diagnosis because they were not believed.
Would male patients be expected to politely tolerate not being taken seriously?
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I recently had surgery to put a skin graft over the hole left by removal of skin cancer on my nose. The anesthesiologist came into the cubicle to meet me and announced, “I hear you have microvascular angina.” (using dramatic air quotes).
He added, “a diagnosis not known outside the University of Madison, Wisconsin but I guess your cardiologist believes it.”
I spent a few minutes wondering if the surgery would go ahead if I refused to have him do the anesthesia. After the surgery for which I was conscious but getting IV pain medication, I learned I’d been given the bare minimum narcotic because they (anesthesiologist and nurse anesthetist) were worried about my heart.
I went ahead with the surgery but complained to the plastic surgeon later and wrote a formal complaint to the hospital.
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Hello Sara – those “air quotes” for dramatic effect remind me of one of my blog readers whose cardiologist told her flat out “I don’t believe in coronary microvascular disease!” (as if they had been talking about the Easter Bunny or Santa Claus!)
Earth to your anaesthesiologist: actually, people outside of Madison do indeed know about MVD!
It’s disheartening to know that some physicians are still uninformed about this condition. Not sure of the nature of your complaint to the surgeon and the hospital (e.g. were the minimal pain meds insufficient to address your surgical pain?) I’m not a doctor, of course, but the docs I do know tend to err on the side of caution when it comes to considering every possible risk factor before surgery.
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Beware the “I don’t believe in…”
I had a heart surgeon tell me he didn’t believe in extended myectomy for obstructive Hypertrophic Cardiomyopathy …. which I found out later meant he didn’t know how to do one!
He did the 1960s version of a ventricular myectomy and I ended up having my open heart surgery re-done at Mayo Clinic where they believe in extended myectomies and know how to do them!
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I agree Jill! I’ve experienced the “I don’t know how to do this, so it must not be worth doing” knee jerk response before, too.
For example: when I was in the ER in mid-heart attack, my (now) cardiologist was urgently called in to see me. He reviewed all my diagnostic tests, and then he performed a simple non-invasive cardiac diagnostic procedure called the HepatoJugular Reflux exam (first performed by Louis Pasteur in 1885, so it’s been around a long time). https://youtu.be/JxyECMTEmmc The cardiologist then announced: “I can tell that you have ‘significant’ heart disease!'”
Yet over the years, whenever I mention this impressive (and non-invasive, pain-free) cardiac test, I’ve noticed that younger cardiologists who don’t have specific experience doing this procedure tend to dismiss it. It doesn’t mean that the test no longer works – it just means that they don’t know how to do it.
A positive HJR test can often reveal serious conditions like constrictive pericarditis, right ventricular failure (commonly due to heart attack) or restrictive cardiomyopathy.
Perhaps this useful test is rarely taught to med students anymore in favour of high-tech alternatives? As one experienced cardiologist noted: “With the rapid advancements being made in diagnostic tools, including imaging or invasive tests, there has been reduced emphasis on physical examination skills.”
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I would like to pierce the back of my fired cardiologist with a nail gun like I experienced at 3am 5 years ago, because he said that wasn’t a cardiac symptom. I felt he was prejudiced against women and I sensed a little condescending vibe. After that, I had my bypass, thanks to my PCP and a cardiologist that listened.
I think most of the medical community has become lackadaisical concerning women.
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Ouch! That sounds very painful, June. Even a cardiologist who is lackadaisical might guess that back pain can indeed be a cardiac symptom.
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My primary care physician (female), directed me to see my cardiologist (male), regarding the blue toes on my left foot, along with diminished pulses within that foot. So, a direct referral, right? Right.
Now, I knew not to expect much from my cardiologist. What I did not expect was to be treated as though I was a heinous criminal on trial. At least three years with no PVC’s, following that trial, they have resumed. During the visit, I found myself stating, “I am not the enemy.” And, “I would not have come had my primary care physician not instructed me to do so.”
The Medical Assistant, aka ‘Witness for the Prosecution’ was instructed to be in the room with my cardiologist, “to take care of the records.” Thereupon she entered every word spoken into the electronic medical record. This was not a new procedure; this was done with me. What ‘case’ is being built? I wonder.
I asked about vasodilators, in general, so cardiologist prescribed one. Period. He ordered no tests. He was not going to have me remove my socks to check the pulses. Which, when I did, so he had to, he said that the pulses were diminished on both feet, not just the one, and that “different practitioners have different findings.”
With my scheduled actual annual exam upcoming in a few weeks, he said, “So. Six months then.” To which I replied, “Well, no. My annual visit is scheduled in a few weeks.” He didn’t say a word.
From the moment he walked into the room, the pervasive attitude was of prosecuting attorney badgering the accused. If reporting him would do any good, I would do so. But it wouldn’t. It will be interesting to learn how my primary care physician will view the ‘court’ documentation, and how whatever this interaction was, will effect her future care.
I would change cardiologists, but they are all in the same practice. And, as I was ‘convicted’ for being there…looks like I’ll be sans cardiologist. (And better off for that).
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It’s distressing to view an appointment with one’s cardiologist as like being on trial.
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It took me over 20 years to get a correct diagnosis of Obstructive Hypertrophic Cardiomyopathy.
When I was 30 and complaining of chest pain and PVCs after every meal….they said that I had Mitral Valve Prolapse and not to worry about it.
For 10 years I was treated for asthma….Which strangely disappeared when my HCM was treated properly. The peak of frustration had to be when I walked 1/2 block to my PCP appointment after lunch, with 6/10 chest pain and pounding so loud in my chest I thought my heart would burst….I went into the office and demanded my doctor listen to my heart right now! She listened to my heart and said I had a 4/6 systolic murmur ( by the way that is a very loud murmur and definitely not normal) She then shrugged her shoulders and said …. but all your tests are normal. AAAARGH!!! She didn’t even say. “I think you should see a cardiologist!”
I referred myself to a cardiologist the next day and never went back to that doctor again. I got properly diagnosed in 2006 and have had the great pleasure of having a cardiologist that listens and cares through the years of complications and testing and surgeries I have had since then.
He even finds it fascinating how I can “feel” when my meds aren’t right or my potassium is low. I feel like we are a team…. We get lots of stuff accomplished by phone and email because he knows how much I hate the ER. He is going on vacation in April and I just pray nothing happens while he is gone. I am gratefully spoiled.
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Hello Jill – I wish all women could feel as “spoiled” as your cardiologist makes you feel! He deserves a lovely vacation – so, good luck next month staying nice and healthy!
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I thought I was going crazy. Thank you a million times for your insight.
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You’re welcome, Kathy!
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Don’t forget pleurisy in your list of misdiagnoses. Mom was diagnosed with pleurisy over and over, including in ER the night before she died of a heart attack!
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Oh, how awful, Pat. Such a tragic and preventable misdiagnosis… My condolences on your loss…
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