by Carolyn Thomas ♥ @HeartSisters
I was once asked by a U.S. publisher to review a new book written by a heart patient, a memoir about her surprising diagnosis. But about 12 pages in, she mentioned that she had been a chain-smoker for three decades before her “surprising” cardiac diagnosis. I had to re-read that line. How could a person who had been chain smoking for decades possibly be “surprised” by this predictable outcome? Didn’t this clearly intelligent, educated woman know that smoking is a dangerous risk factor for heart disease (and a whole bunch of other nasty health issues)? I thought of this book recently when a new study from Harvard researcher Dr. Catherine Kreatsoulas reported that women are in fact more likely than men to underestimate their own risk of heart disease. . . . . . .
She explained that, because there’s been a common historical misperception that heart disease is a ‘man’s problem’, “we knew little about the factors that influence our personal cardiac risk assessment – and whether that assessment varied by gender.” Her suspicions that women were the ones doing the underestimating were confirmed this month with the publication of the PRISM study: the “Patient Risk Interpretation of Symptoms Model: How Patients Assess Cardiac Risk”.(1)
This new study’s findings are a big concern to me.
I recall the sobering 2019 national survey results from the American Heart Association that blew the top of my head off. Those shocking results suggested that women’s awareness of heart disease and their own cardiac risk factors in general – and cardiac symptoms specifically – hasn’t only not improved since the last AHA survey, but is actually WORSE than it was 10 years earlier! Barely half of all women surveyed, for example, were aware that chest pain is a symptom of heart attack. Yes. You read that right. See also: Women’s Heart Disease: An Awareness Campaign Fail
Women can’t get appropriate cardiac treatment until we report our cardiac symptoms to a physician, and we’re not going to report them if we’re not even aware that chest pain is the most common cardiac symptom (in both men and women), and we’re even less likely to seek help if we’re unaware that our symptoms represent a cardiac risk.
I’ve been writing about Dr. Kreatsoulas and her cardiac research in women for several years:
For example, she has studied the words women use to describe their cardiac symptoms to physicians. She and her colleagues found a difference between how men and women describe chest pain, which (as I’m mentioning here for the second time) is the most commonly reported heart attack symptom in both sexes. But she found that women sometimes used different language to describe their symptoms compared to men.
When I first interviewed her here,(2) I was shocked by her description of witnessing women arguing with Emergency physicians – even in mid-heart attack – and especially by the words women tend to use to describe their cardiac symptoms:
“I cannot count the number of times I observed a physician leaning over a female heart patient in the Emergency Department while asking: ‘So tell me about your chest pain’ – and the woman very quick to respond:
“Well, I don’t really have chest pain. I have a discomfort, it’s more like pressing, I wouldn’t call it chest pain, I would describe it more as a bad ache. . .”
“And much to my amazement, I would observe the physician record in the patient’s notes, ‘No CP’ – meaning no chest pain!“
As Dr. Kreatsoulas reported, it’s relatively common among female heart attack patients to use words like “pressure, heaviness, fullness, tightness, aching, burning” instead of the word “pain” to describe their chest symptoms. She told me later that she wonders how many women’s charts say “No CP” because of the words they said to a physician – not because they don’t have chest pain.
Another research topic that Dr. Kreatsoulas and her colleagues have investigated was what she calls the “symptomatic tipping point“, that transitional period between experiencing the first cardiac symptoms and seeking medical attention. In other words, when women repeatedly ignore their symptoms, what pushes them to finally seek emergency help?(3)
As she explained:
“We identified six stages before patients seek medical attention and the stages were similar between men and women varying only in duration between and within the stages, as women would wait for a more severe confirmatory event to occur before they would qualify their symptoms as “possibly cardiac”.
Those six stages, in chronological order, include:
- a period of uncertainty (patient attributes cardiac symptoms to another health condition)
- denial or dismissal of symptoms
- seeking assistance/second opinion of someone else, e.g. a friend or family member
- recognition of severity of symptoms with feelings of defeat
- seeking medical attention
When I asked Dr. Kreatsoulas about her team’s research findings, she explained:
“We found several surprising things in our study:
• “The six stages of the ‘symptomatic tipping point’ emerged during the qualitative part of our study. We had no prior knowledge of how patients transition between the internalization of symptoms, the expression of symptoms, and the thinking process that occurs before determining that they need medical attention for these symptoms. This is a novel finding.
• “While we know from prior research that women come to hospital later than men with more advanced stages of heart disease, we were surprised to uncover that one of the reasons for this may be that women go through a longer period of denial than men. While both women and men go through that first period of uncertainty when they are running through a host of other possible health conditions they could attribute their symptoms to (i.e. indigestion or a pulled muscle), men would readily consult with a loved one or friend in this uncertainty stage, but women did not. Even by the time patients reached the fourth stage of recognition of severity of symptoms, men had more self-recognition that they required medical attention – but women tended to wait for others to comment on their symptoms, and then they reacted to those comments.
• “In the quantitative study, we were surprised that while men and women were equally likely to seek medical attention for their symptoms if they felt physically limited by their symptoms, if they felt a change in the severity of their symptoms, or if they experienced a long duration of symptoms, women would wait for symptoms to become significantly more severe and frequent than men.
• “We were surprised that even when female heart patients finally came to the hospital, 1/3 still believed the symptoms were not related to their hearts.
• “Even more surprising, when we asked patients less than an hour prior to undergoing their diagnostic angiograms, women were less likely to think that their symptoms could be due to their hearts compared to men (statistically significant).”
My own gut feeling, however, is that those of us who have personally engaged in this “treatment-seeking delay behaviour“ as described in many research studies on female heart attack survivors – e.g. this study published in the American Journal of Critical Care(4) – may not actually find these observations surprising.
But surprising? No!
One only has to watch Elizabeth Banks’ hilariously chilling Go Red For Women™ video called Just A Little Heart Attack to recognize the distressingly common treatment-seeking delay behaviours that she perfectly nails in just three short minutes of trying to minimize her symptoms – in which she asks her worried young son the classic treatment-seeking delay question:
“Honey, do I look like the type of person who has a heart attack?”
This is so perfect! As a longtime distance runner, I too never imagined that I was even remotely that “type of person”. (I’m guessing that very few women think that they look like “that person”!)
I was, in fact, pitifully ignorant about heart disease before surviving my own cardiac event. It was almost two years after my heart attack, in fact, before I learned that women with pregnancy complications (like the preeclampsia I’d been diagnosed with during my first pregnancy) are at 2-3 times greater risk of heart disease – often years later. Pregnancy has in fact been called the “ultimate cardiac stress test”, and is now the focus of a relatively new medical specialty called Cardio-Obstetrics.
At my Heart Smart Women presentations, I’ve often been asked by audience members who are suddenly worried about their own personal risk of one day ending up like me (a surprised heart attack patient!) – often adding something like, “My grandmother died of a heart attack!” or “I have high blood pressure!” My stock answer (after the standard “I’m-Not-A-Doctor” disclaimer) is that there is simply no downside to living as if we knew with 100% certainty that we’re at very high risk for cardiovascular disease. Even without having any cardiac risk factors, we already know that quitting smoking, exercising your body, eating healthier, getting a good night’s sleep, and learning to manage stress are good ways to live life. And cardiologists have been warning us for years that most heart disease is preventable by making those kinds of lifestyle changes.
Heart disease may look very different in different people. Before my heart attack, if I ever thought about heart disease – which was approximately never! – I pictured an old fat guy out on the golf course, suddenly clutching his chest and falling down unconscious. Just as Dr. Kreatsoulas described in this month’s published study, I too thought of heart disease as a “man’s disease”. By the way, that old fat guy does exist, but that’s likely sudden cardiac arrest – (an electrical problem of the heart) and not a heart attack (a plumbing problem) – which is what I had.
Compared to that old fat guy, I walked into the Emergency Department on my own steam (twice! – two weeks apart), unaided, alert and conscious despite my severe symptoms of central chest pain, nausea, sweating and pain radiating down my left arm. This is what women in mid-heart attack can look like!
I think I went through all six stages before reaching that “symptomatic tipping point” that Dr. Kreatoulas describes. The first stage (a period of uncertainty ) in which “the patient attributes cardiac symptoms to another health condition” was certainly assisted by an Emergency physician who sent me home with a misdiagnosis of acid reflux after my first visit to his Emergency Department.
But if a woman with textbook Hollywood Heart Attack symptoms like mine can be immediately assessed incorrectly, what hope can there be for a woman with vague or unusual cardiac symptoms?
How likely will women be to return to that hospital when their cardiac symptoms return?
And most importantly, what effect does being misdiagnosed in mid-heart attack and turned away from the hospital have on women’s well-documented reluctance to seek emergency treatment for their cardiac symptoms?
Perhaps that’s a new focus for future cardiac research from Dr. Kreatsoulas and her colleagues?
1. Kreatsoulas, C. et al. “Patient Risk Interpretation of Symptoms Model (PRISM): How Patients Assess Cardiac Risk”. J GEN INTERN MED (2021).
2. Kreatsoulas, C. et al. “Reconstructing Angina: Cardiac Symptoms in Women and Men.” JAMA Intern Med. 2013; 173(9):829-833.
3. Kreatsoulas, C. et al. “The Symptomatic Tipping Point: Factors That Prompt Men and Women To Seek Medical Care.” Presented at the Canadian Cardiovascular Congress, October 2014. Canadian Journal of Cardiology Volume 30, Issue 10, Supplement, p.S132.
4. Rosenfeld, A et al. “Understanding Treatment-Seeking Delay in Women with Acute Myocardial Infarction: Descriptions of Decision-Making Patterns”. Am J Crit Care July 2005 vol. 14 no. 4 285-293
I wrote more about addressing cardiac risk factors 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 save 30% by ordering this book directly from Johns Hopkins University Press, using their code HTWN
Q: If you’re a heart patient, what do you think was YOUR most significant cardiac risk factor?
-Learn more about which cardiac risk factors may make you more likely to have heart disease
–What prevents heart disease “better than any drug”?
–Women’s heart health advice: Walk Far, Walk Often
–When cancer treatment damages your heart
16 thoughts on “Did you underestimate your cardiac risk?”
Here’s an interesting topic, in relation to the concept of underestimating cardiac risk. I have a friend who is in her late 60’s, considerably overweight who doesn’t exercise very regularly. She was diagnosed with atrial fibrillation in the past year and saw a cardiologist maybe 2 wks ago who wanted her to have a stress test which was supposed to take place today.
However, my friend rescheduled it for 2 months from now. Why? From what she said, it seemed she wanted the time to get in shape before the test. I was dumbfounded. There wasn’t much I could say as I think she sees me as an exercise/health nutjob (my cardiologist wants me to exercise every day if possible and I usually manage 5 days/wk, plus I am really careful about diet) so anything I might say would fall on deaf ears.
But Carolyn, any thoughts about delving into the issue of patients self-sabotaging their own health? My friend has a doc who is taking her health seriously, but inertia, pride, denial, fear and I don’t know what else may be preventing my friend from getting the tests she needs in order to get optimal care.
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Hello Helen – that is a very interesting AND yet a surprisingly common story!
It turns out that a study called “Why Do People Avoid Medical Care?” published in the Journal of General Internal Medicine identified “embarrassment” (including feeling embarrassed over body weight) plus “potentially disclosing engagement in unhealthy behaviors” as two of the commonly reported reasons that patients postpone or cancel medical appointments. Here’s the link, FYI: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4351276/
When you think about it, even though it’s hard for people who eat healthy and exercise 5 days a week to comprehend this, it’s no wonder that a person who is overweight and probably severely de-conditioned due to lack of exercise might be dreading a stress test where she has to RUN on a treadmill…
Take care, stay safe. . . ♥
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Yes, I also think that when one comes close to dying and is revived as I was, that it changes much about how one values, perceives and approaches life.
Before having that kind of scare personally, it can be easy to take life for granted. I’m sure some of that plays a role in this issue.
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Yes, that’s what most people would expect! – that after surviving a terrifying close call, patients would be highly motivated to change. And that IS what happens to many people after a serious cardiac event. And those are the patients who often get invited to speak at fundraisers and conferences during Heart Month to inspire others in the same boat. But as the PURE study results suggest, the stats on these cardioprotective changes (or not!) after a cardiac event are truly surprising:
The landmark PURE study (published in JAMA in 2013) looked at over 7,500 survivors of cardiovascular disease in 17 countries and found that:
– 18 percent of them continued to smoke
– 65 percent did not exercise
– over 60% did not improve their diets
There are of course many potential theories as to why so many survivors don’t make the changes that their doctors are likely clearly telling them to make. I’m not a physician, of course, but I suspect that personality plays a role here, as does being overwhelmed and depressed after a shocking diagnosis. The European Society of Cardiology reported after their last conference, for example that 40% of those diagnosed with heart failure develop new-onset depression as a result of that diagnosis.
This is why I also suspect that we could learn more from psychologists who study human behaviour about what tends to work (or not!) in motivating change than from cardiologists who still somehow believe that just giving more and more information is all that’s needed to motivate every new patient. Clearly, based on the PURE study and many other studies, that’s simply not working for many folks . . ♥
It’s a good story but I never had any form of pain. I have bronchial asthma and a bad bronchial cough. Even when I saw the cardiologist I told him I was having an uncontrolled asthma attack. I had no chest, arm or any form of pain. I told them I had been inhaling Albuterol and Streroids every 15 to 20 minutes until I started vomiting and sweating. Told them I might have overdosed. I had six different inhalers. He has placed no pain in all my records, I felt nothing in my chest at all.
Hi Robin – your scenario is what Dr. Kreatsoulas was describing in her research, i.e. that women tend to under-estimate their risk of heart disease compared to our male counterparts. In your case, like many women, you blamed those distressing symptoms on anything BUT your heart.
Take care. . . ♥
This reminds me of what I said when I was asked if I was having any chest pain recently. I said just a little intermittent pressure in my left chest. I was telling this to a nurse on the Ventricular Assistance Device team in our first meeting. I’m being screened for implantation of a heart pump. That day I thought the answer was good because it elicited no reaction.
Reading your column, I realize I minimized all of my symptoms in an effort to prove to myself I don’t need a VAD. Hmmm.
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Mahjo, what you describe is so common! Thank you for telling us this. Minimizing symptoms is pervasively recognizable in women’s heart disease – I often believe it’s part plain old denial (after all, I’d rather not have this cardiac condition, thank you very much) and part societal conditioning to not make a fuss, to not be seen as a complainer. Dr. Kreatsoulas’ research consistently reports this minimizing behaviour in women.
I wrote more about this after one of my readers told me of her own experience carefully applying her makeup before her doctors’ appointments so she’d “look good” for the visit, so the doc wouldn’t see how bad she was really feeling. https://myheartsisters.org/2012/10/30/looking-good-cardiology/
Take care, be safe . . . ♥
I think denial is a powerful force working on most people, kind of a coping mechanism in some ways, although not a very effective one.
After reading this insightful post, it occurred to me that perhaps the roots of some this behavior begin very early on. Even with regard to other types of health issues, some of us are attuned to what is happening in some parts of our bodies and less so in other parts. Plus, some may be more aware in general.
I’d venture to say that being more aware of one’s body may enhance the possibility of birthing healthy babies, so it may be hard-wired into women’s systems. I don’t know. I have had medical people doubt my non-cardiac issues, even though I wound up being correct. There’s a certain way I feel when I’m coming down with the flu. I really cannot describe it so physicians and PA’s are doubtful when I say there’s this weird tingly feeling that happens right before I get the flu. And, I’ve had the hesitancy regarding heart stuff too.
BUT, here’s the key point: After being doubted so many times, and after going to the ER or doctor’s office several times only to wait for hours and then be treated as if I was a hypochondriac, I most definitely hesitate when I experience weird symptoms. It is learned behavior and not just with regard to my heart. There needs to be mutual respect here between doctor and patient. Some of the breakdown begins in areas outside the heart, but often the failures are more evident in cardiac-based situations as the consequences often have life and death implications.
If physician education in general involved more emphasis on how people communicate differently and on how people have different levels of awareness with regard to their body, it would be quite helpful. I went for years being completely unaware of having palpitations and extra beats every fourth beat to the tune of more than 30,000 extra beats per day but very aware of sensations that mean I’m getting the flu. We’re all different. That needs to be respected.
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Thank you Helen for raising such interesting points here. You describe knowing your own body in ways that your healthcare professionals don’t always recognize or believe. I have come to think that this “knowing” is a common reaction based simply on the feedback I repeatedly get from so many heart patients who say things like “I knew something was VERY wrong…” We have to not only be attuned to those symptoms so that both we and our physicians will take them seriously, but also willing to keep speaking up even when we’re treated like “hypochondriacs”, as you say.
I often tell the story of a woman I met during my Mayo Clinic training who was sent home from Emergency three times. On that third visit, she was advised to take anti-anxiety medications. On her fourth visit, she was admitted for double bypass surgery. The smartest thing she did (unlike me!!) was to keep going back, and each time she said loud and clear: “I know my body, and I know that something is wrong with me!” We all have to be more like this woman, and less willing to paste on our happy face while pretending that everything is “fine, just fine. . . ”
Take care and stay safe out there. . . ♥
PS I wrote about Helen (a Heart Sisters blog reader in Winston Salem, North Carolina) in “The Handle Bar-Gripping Cardiac Symptom“.
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I wish I had had a clue! I was only 48 when I had a heart attack and 2 cardiac arrests on July 4 2019. I’m still dealing with the fallout of a very difficult time. I’m not sure it would have helped if I had known I was in any way at risk.
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Hello Samadhi – you were SO young to become a heart patient! I’m guessing that you were alone among your social circles in experiencing what you went through at that time – nor could they even imagine what that crisis was like for you.
This weekend was your 2nd “Heartiversary” – a milestone in your recuperation… Some cardiac risk factors are more obvious (family history, smoking, diabetes, pregnancy complications, high blood pressure, etc) while others are far more mysterious. What we do know is that heart disease is 20-30 years in the making, which means that you likely did not have your heart attack because of something that happened on July 4th two years ago, but far more likely that something damaged your delicate coronary arteries decades earlier.
Sometimes we can point a finger at a specific likely culprit, and sometimes we are stumped when seeking a reason.
Hope you continue to heal. . . ♥
I’m sorry to say, It would be easier for me to list the risk factors I don’t have.
I am currently blessed with Diabetes, overweight, low activity, High LDL, unable to take statins, a stent placement 3 years ago, and cardiomyopathy….
But I guess the most worrisome risk factor for me and my cardiologist is the high level of “bad” lipids In my blood. I have recently been diagnosed with kidney disease which…. guess what?….raises your cholesterol levels! I am taking a very expensive new drug Repatha which brought my LDL value down to 147 from 280. ( My Cardiologist dreams of getting it down to 70) But I remain quite guarded about my risk for an MI and I am probably over sensitive rather than under sensitive to “Chest Pain”.
Right now I am working with docs to address fatigue and become more active… Getting IV Iron infusions for 4 weeks.
In general, I don’t talk about my medical issues to friends and family. I just don’t need their “Oh dear me, I am so sorry “ energy around me…. but sometimes just dumping the issues onto a written page provides stress release… which is good for my heart? yes?
So thanks for listening Carolyn 😉
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Hello Jill – I agree: sometimes dumping issues helps, especially when we feel like we can’t really share these kinds of issues with family/friends. I think we have to choose our listeners carefully at the best of times, and when a number of chronic issues are at play, even MORE carefully. . . I’m so glad you raised the topic of working with your doc to address fatigue – good luck with those iron infusions.
Take care, one step at at time. . . ♥
My definite, clear, obvious (in retrospect) primary risk factor for a heart attack was undiagnosed, untreated T2 diabetes (in spite of a grandparent on both sides of my family having diabetes).
I had no effective access to health care at the time. I had classic chest pain which I fretted over but didn’t tell ANYONE because of the lack of health care, my husband’s demanding career (working 16 hours a day), my two teenage sons who need me to drive them to and from numerous activities, and a 4 year old daughter.
How could I (so I thought, though not in so many words) disrupt their lives? Another undiagnosed factor was a defective right coronary artery, that effectively doesn’t feed the heart at all. It’s amazing those two factors didn’t kill me right off, but it was another 20+ years before I was diagnosed and treated, in spite of a “passed” cardiac stress test 6 years before diagnosis.
An ICD, six stents and a fistful of cardiac meds later, I probably won’t die of a heart attack, but all the other damage undiagnosed diabetes causes are still with me. It sucks.
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Holly, that history of yours DOES indeed suck! It’s almost as if all those circumstances were adding up over time to test the limits of human endurance. How did you ever survive that brutal combination of no access to health care, putting yourself last on the family priority list (despite your symptoms) and undiagnosed medical conditions?
I wrote once about how common it can be to feel like our body has somehow let us down, even betrayed us – but the flip side of that is that YOU have survived what many do not – despite your personal history! Your brave little heart has kept you going.
You take care of your precious self! ♥