Let’s pretend that atypical heart attack symptoms don’t exist

~ Carolyn Thomas
by Carolyn Thomas  ♥  @HeartSisters  

Two cardiology reports landed in my inbox on the same day this past week, in the  same issue of the same cardiology journal. The first was a Yale University study on how women, particularly women younger than age 55, fare worse after surviving a heart attack compared to male counterparts, partly because of a tendency to present with vague or atypical symptoms that can delay accurate diagnoses.(1) The second was about the future of the American Heart Association’s Go Red For Women® campaign.(2)*   Both papers were published in the journal, Circulation.

The trouble was this: each report seemed to contradict the other.

In a nutshell, here’s the key section that caught my eye and raised an eyebrow from the second journal article, written by Israeli cardiologist Dr. Donna R. Zwas. She recommended six steps that the Go Red awareness-raising campaign for women’s heart disease should take.

The #4 step on this 6-step list was this one:

“Simplify the message. The long list of potential signs and symptoms (of heart attack) is confusing and ultimately may decrease the likelihood of seeking help.

“If all of the atypical symptoms are given almost equal weight, and many may be experienced on a daily or weekly basis, a woman is unlikely to seek help even when she has chest pain. In our education programs, we find that women under-recognize the symptoms before the program, but frequently over-recognize unrelated symptoms afterward.

“If almost anything and everything can be a heart attack, there is no longer a clear trigger to action.

“Because women without cardiac disease commonly suffer from pain, including shoulder pain or back pain, the Go Red for Women® campaign should focus on chest pain, shortness of breath, and the intensity of the symptoms.“

I had to re-read that section of the recommendations a few times just to make sure I’d read it right. Then I had to go have a wee lie-down to recover. . .

I was so shocked by this goofy recommendation (essentially, to stop telling women about potential cardiac symptoms) that I sent a letter to the editor of Circulation expressing my concern. Those vague, atypical heart attack signs are in fact confirmed by many women (and also by many, many studies like the Yale research published in the same issue of the journal).

Here‘s what I wrote to Circulation about the potential new direction of the Go Red campaign:

“RE: Zwas, Donna R.. ‘Redressing the Red Dress.’ Circulation 137.8:  763-765. Feb. 2018.

From: Carolyn Thomas (submitted on 2/20/2018):

“Step #4: Let’s forget about all those pesky atypical symptoms”

“I was surprised to see the conclusions illustrated in Step #4: ‘Simplify the message’.

“The report suggests that the Go Red for Women® campaign has been a little too successful in educating women about atypical cardiac symptoms. If Go Red messaging is too confusing to women, why not clean up the confusion rather than trashing the message?

“I’m not a physician. I’m simply a dull-witted heart attack survivor who, in the 10 years since my own cardiac event, has spoken (and listened) to thousands of women (and a few men!) – sharing what I learned during my training at the WomenHeart Science and Leadership advocacy program at Mayo Clinic. My blog ‘Heart Sisters‘ has had over 13 million views so far from 190 countries.

“ Previous studies suggest that between 10-42% of women experience no chest symptoms at all during MI. The rates vary, depending on the study, but they still describe women who present with only the vague or atypical cardiac symptoms now described as ‘too confusing’ for women to act upon.

“In my opinion, this puzzling and unfortunate step will push women’s awareness of cardiac symptoms backwards an entire decade.”

Meanwhile, over at Yale University, researchers led by study author Dr. Judith H. Lichtman investigated almost 3,000 women and men aged 18 to 55 years, all hospitalized for acute heart attack. Here are some of their key findings reported in the same cardiology journal:

  • chest pain (defined as pain, pressure, tightness, or discomfort) was the most frequently-reported heart attack symptom in both men and women
  • women were more likely to present with three or more non-chest atypical symptoms than men, regardless of the presence of chest pain
  • women with a type of serious heart attack known as STEMI (ST-Elevation Myocardial Infarction) were more likely than men to present with no chest pain
  • women were more likely than men to seek medical care for cardiac symptoms before their hospitalization, but more of these women reported that their physicians did NOT believe their symptoms were heart-related (otherwise known as “misdiagnosis”)

For the time being, the AHA’s Go Red For Women® website does support the well-known premise that there are indeed important non-chest signs of heart attack in women. Cardiologist Dr. Susanne Steinbaum, for example, discusses on the site what she calls women’s silent heart attack symptoms including jaw pain, neck pain and nausea. Should that section be deleted from the site to avoid confusing women?

In my Heart-Smart Women presentations, I cover all possible heart attack symptoms – both typical and atypical, both the famous and the bizarre. But I also know that very few if any of my audience members are going to rush to the Emergency Department for every future twinge of neck pain or nausea just because I mention them in my talk.

For women, the problem is more often just the opposite: an acknowledged reluctance to seek appropriate help – even for textbook Hollywood Heart Attack symptoms (or what researchers call our treatment-seeking delay behaviour).

So I also remind women to respect the small voice inside that says “something is really wrong with me”. I like to ask them:

  “What would you advise if these exact same distressing symptoms, or combination of symptoms, were happening to your mother, or your daughter, or your sister, or a friend?  Take the same action to seek help that you’d demand for others, but do it for yourself!”

That’s the key message:

  “YOU KNOW YOUR BODY! You KNOW when something is just not right. And if those vague symptoms feel unusual or alarming to you, then pay attention and seek help!”

Do you believe that fully informing women about ALL cardiac symptoms would be too confusing for their tiny brains to comprehend?  Me neither. How is withholding information about women’s #1 killer more effective for the Go Red campaign than sharing it? And how is doing so to somehow protect a target audience that’s easily confused not insufferably patronizing?

♥

1. Judith H. Lichtman et al., Sex Differences in the Presentation and Perception of Symptoms Among Young Patients With Myocardial Infarction.” Circulation. 2018;137:781-790, originally published February 19, 2018
2. Donna R. Zwas, “Redressing the Red Dress.” Circulation. 2018;137:763-765, originally published February 19, 2018

Q: Is the Go Red for Women® campaign too “confusing” for you?

NOTE FROM CAROLYN:   I wrote more about cardiac symptoms (yes, all kinds of cardiac symptoms that women report) in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop (please support your independent neighbourhood booksellers) 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).

See also:

How does it really feel to have a heart attack? Female survivors answer that question

Researchers openly mock the ‘myth’ of women’s unique heart attack symptoms

Words matter when we describe our heart attack symptoms

Why wouldn’t you call 911 for heart attack symptoms?

How can we get female heart patients past the E.R. gatekeepers?

Early warning signs: how women can tell if they’re headed for a heart attack

Heart attack misdiagnosis in women

Why we ignore serious symptoms

Denial and its deadly role in surviving a heart attack

The sad reality of women’s heart disease hits home

Slow-onset heart attack: the trickster that fools us

Published by Carolyn Thomas

33 thoughts on “Let’s pretend that atypical heart attack symptoms don’t exist”

  1. This is not exclusively a problem for women. The list of common symptoms of a heart attack are so vague that they do more harm than good. If you have anxiety and feel any pain in your chest or numbness in the arm you start to freak out. HOW MUCH pain? HOW NUMB?!? If the symptoms cannot be distinguished from general discomfort after a run and hard breathing, then get rid of the lists completely!
    Discomfort in the chest? I guess every single person with the flu who has been coughing for a while is at risk!
    The list of symptoms is so ludicrous that I have spent most of my 43 years feeling all of them from merely being active.
    Is it any wonder that the emergency rooms are overcrowded when we have stupidity like this keeping people paranoid all the time?

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    2. Russ – And if that list helps someone to realize she may be having a heart attack, would ignoring those atypical symptoms and dying just make her collateral damage?

      What’s ludicrous and stupid is NOT paying attention to signs that something is wrong.

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  2. Well spoken Carolyn. There is nothing quite like a dull witted heart attack survivor. Women can be so confused sometimes it is best just to keep things simple for them. (Is there an icon to indicate IRONY?)

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  3. Thank you for bringing this to our attention Carolyn and even greater thanks for writing that rebuttal. If everyone here wrote something similar to your message and sent it to Circulation, I wonder what they’d do? At the very least they might publish your letter. Why don’t we all try?

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  4. Insufferably patronizing indeed! I’m so watery from being protected….from myself ….! As if boiling down incredibly complicated heart symptoms to 2 or 3 would actually simplify anything!

    Good grief….

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    1. Hello Sunny – Ha! When you put it like that, that “cure for confusion” recommendation seems even more goofy, doesn’t it?

      And maybe also explains why we haven’t expanded that kind of recommendation to other areas of life (like how about “Weather forecasts are too complicated to figure out, so we’re just going to stick with SUNNY from now on!”)

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  5. Oh wow. I literally threw my hands up in outrage reading that excerpt – absolutely condescending and rooted in sexist ideology that we womenfolk are just too dang easily confused and it’s best to keep things simple for us. Insert the eye-rolling here.

    I’m really glad you wrote that letter challenging how dangerous such a change to the campaign would be. I’m hoping the journal will get sufficient outraged letters that it will need to be addressed in some sort of retraction: “Hey sorry we forgot women are fully intelligent, autonomous human beings capable of taking in complex, varied information and making sensible decisions with it. Our bad.”

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    1. I can just picture you throwing your hands up, Chase! It would be hilarious if this recommendation wasn’t offered as a serious “solution” to what this physician sees as the problem with us confused womenfolk!

      But somehow, I’m not holding my breath for that particular journal response… 😉

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  6. Wow. The intensity recommendation is also stunning. I had two SCAD-related MI’s, 8 days apart. My pain rating on a 1-10 scale was 2 for the first and less than 1 for the second. I credit years of mindfulness meditation for noticing that my weird sensations were not right. I credit the EMT’s, firemen, medic response team, and E.R. workers for treating me seriously, and asking about a range of symptoms.

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    1. Oh, thanks Elizabeth for adding that observation about the “intensity of symptoms” recommendation from Dr. Zwas.

      Although it does seem intuitive to believe that big symptoms = big heart muscle damage, that is simply NOT always true (as perfectly demonstrated in your own example). That’s another important point to add to the Go Red list of women’s atypical symptoms (i.e. that these symptoms can range from mild to severe in intensity, but that the severity of cardiac damage is not necessarily related to the severity of the symptoms).

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    1. That’s such good advice, Carol – especially when that fatigue or loss of energy is beyond anything you have ever experienced before. Women sometimes describe this fatigue as not just simply feeling “tired” (as we all feel frequently!) but as a crushing, debilitating exhaustion that feels very very different than any fatigue they’ve ever had.

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      1. Thank you for describing this. I told my doctor that it felt as though I was too tired to breathe. The doctor looked at me like I was crazy and left me feeling as though I had said a bad word. I went on feeling that way long after my heart attack was diagnosed.

        It is no small thing to have symptoms regarded as hysteria because you are a woman. While they eventually diagnosed my problem, I went through this period of uncertainty of my ability to judge the importance of my physical symptoms, but came out the other end better for it.

        I have become a powerhouse of questions at the doctors office… he knows that I know.

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  9. Thanks, wow! Before my very hard to diagnose left main blockage that led to a triple bypass in the nick of time, my symptoms were a very bad headache and anxiety that I felt in my chest. That week as I worked as a dental assistant, I had also noticed as I leaned over a patient that somehow I was forgetting to breathe.

    Somehow, through the Grace of God, I realized I was having a cardiac event and drove myself to the hospital. After being told “I think you’re fine but sure, let’s observe you overnight. Now please excuse me while I attend to the fellow next door who REALLY is having a heart attack”.

    A stress test the next morning was “interesting”. “Only way we can know more is if we do an angiogram, a very invasive procedure, it’s up to you…” I told them if I felt bad enough to be here, yes, we can do the angiogram. So they did.

    When they got near the blockage my vessels spasmed and they could not continue. As I write this, I have just realized that was another God Intervention. They then did a 64 slice Cat Scan and realized that not only was my left main 90% blocked, there were hardly any vessels to support the right side of my heart. A stent would not be the answer. Triple bypass was scheduled for the following Monday. One bypass for the left main and two to help bring blood to my right side.

    My Dr visit was a Monday night. This is now Wednesday. I was allowed to go home with surgery scheduled on Monday. Thursday I became progressively weaker and shortness of breath did set in. So much so that I had emergency surgery on Friday. Had I not insisted on Monday night that something was very wrong, I would not have survived the approaching widow maker heart attack as the right side of my heart would not have been able to sustain by itself.

    If you feel unwell, be strong and stand up for yourself.

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    1. Thanks so much for this, Jennifer! It seems crazy that the hospital was willing to send you home with surgery planned for four days later at their convenience for a left main blockage!? “Be strong and stand up for yourself” is brilliant and important advice for all women (but admittedly not easy when you are in the throes of feeling ill). Hope you are doing much better now…

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  10. IMHO, most doctors – and first time heart attack patients – have never actually experienced a heart attack. They have studied perhaps lots of them – even if it’s only during medical school. Most people know about heart attacks by what they see in the movies.

    This is similar to being an armchair quarterback.

    Most people and doctors discount silent heart attacks thinking that is big game medicine (aka zebra).

    This is why it’s so important for heart attack survivors to teach others about their journey. We hold the wisdom of our life experience.

    Without that wisdom, you are merely educated…

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    1. Good points, Anne. Just to clarify your ‘silent heart attack’ observation for readers who aren’t familiar with this not-always-correct medical rule that docs learn in med school: “When you hear hoofbeats, look for horses, not zebras” or in other words, look first for the obvious clues: if a patient shows up at the ER without chest pain, don’t think “heart attack”. (As I said, NOT always correct!)

      Love your closing line: “Without wisdom, you are merely educated”. Am going to go embroider that on a pillow now…

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  11. Maybe it’s too confusing for Dr Zwas, but the symptom list seems perfectly clear to me — which makes me wonder what kind of patients Zwas is treating. Or what kind of person she is. I do find her tone rather condescending.

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