Downplaying symptoms: just pretend it’s NOT a heart attack

~ Carolyn Thomas

by Carolyn Thomas  ♥ @HeartSisters

When a blockage or spasm in one or more of your coronary arteries stops allowing freshly oxygenated blood to feed your heart muscle, a heart attack can happen. The faster you can access emergency treatment to address that culprit artery, the better your chances of being appropriately diagnosed.  The period of time between your first symptoms and actively getting the help you need can be divided into three phases:

  1. decision time – the period from the first onset of acute symptoms to the decision to seek care (for example, calling 911)
  2. transport time – the period from the decision to seek care to arrival at the Emergency Department
  3. therapy time – the period from arrival at the Emergency Department to the start of medical treatment

Only the first phase is the one you have complete control over. So don’t blow it.   .       . 

Cardiologists warn us that “time is muscle“, and that the ideal cardiac treatments are those started within one hour of the onset of heart attack symptoms –“the golden hour”, as it’s been described.(1)

Trouble is, most of us experiencing heart attack symptoms – especially females – wait far longer than we should for a number of reasons that at first blush may appear downright goofy to others.

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We’re seeing more emerging research about these reasons. Here are some highlights of just a few studies on the important subject of women’s treatment-seeking delay behaviours:

1. The first study I ever came upon about this subject(2) was profoundly meaningful to me because I recognized myself in each of the six behaviour patterns identified. It’s also the one I cite most often here on Heart Sisters and during every women’s heart health presentation I’ve delivered since 2008.  See also: Knowing & Going’ – Act Fast When Heart Attack Symptoms Hit

The lead author of that study, published in the American Journal of Critical Care in 2005, was Dr. Anne Rosenfeld of Oregon Health & Science University.  She and her research team identified six important patterns of treatment-seeking delay in female heart attack survivors.  These six patterns are:

  • knowing and going (women acknowledged something was wrong, made a decision to seek care, and acted on their decision within a relatively short time, typically 5-15 minutes)
  • knowing and letting someone else take over (women told someone they had symptoms and were willing to go along with recommendations to seek immediate medical care)
  • knowing and going on the patient’s own terms (women wanted to remain in control, were not willing to let others make decisions for them, and openly acknowledged that they did not like to ask others for help – these are the women who drive themselves to Emergency!)
  • knowing and waiting(women decided that they needed help but delayed seeking treatment because they did not want to disturb others)
  • managing an alternative hypothesis (women decided symptoms were due to indigestion or other non-cardiac causes, and were reluctant to call 911 “in case there’s nothing wrong and I’d feel like a fool”  – until their severe symptoms changed or became unbearable)
  • minimizing (women tried to ignore their symptoms or hoped the symptoms would go away, and did not recognize that their symptoms were heart-related)

But even women in that first ‘knowing and going’ behaviour group admitted being confused about the symptoms of a heart attack. The biggest obstacle to reducing women’s treatment-seeking delays is in fact women’s lack of awareness in interpreting heart attack symptoms.   

PLEASE NOTE: While chest pain is the most commonly reported symptom, at least 10% of women experience no chest pain during a heart attack.(3)

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2.  Swedish researchers interviewed women heart attack survivors over age 65 three days after each had been admitted to hospital for a confirmed first heart attack.(4)  The aim of this study was to explore older women’s pre-hospital experiences of their first heart attack. Here’s how researchers described their findings:

”    The women perceived their symptoms as a strange and unfamiliar development, from indistinct physical sensations to persistent and overwhelming chest pain. Understanding the complex experiences of older women in the pre-hospital phase is essential to reducing these patient decision times. The findings of this study should be incorporated into the education of professionals involved in the care of cardiac patients, including those who answer informational and emergency telephone lines.”

This study identified these pre-hospital delaying strategies: 

  • downplaying and neglecting cardiac symptoms
  • symptoms seen as intrusions in their daily lives
  • women defending themselves against this intrusion to remain in control and to maintain social/family responsibilities
  • as their symptoms evolved into constant chest pain, the women began to realize the seriousness of their symptoms
  • when pain became unbearable, they finally took the decision to seek medical care

3.  Another Swedish study found similar commonalities behind treatment-seeking delay behaviour decisions.(5)  . This time, researchers reported that diabetes, older age, and living in a small town or rural area compared to a big city were factors associated with pre-hospital delay times of over two hours.

You might think that having vague or atypical cardiac symptoms might affect how quickly patients would seek emergency medical care, but this particular research found that atypical cardiac symptoms were NOT a significant predictor for pre-hospital delay times longer than for textbook Hollywood Heart Attack symptoms (chest pain, pain down your left arm, etc.)  But see #5 for differing conclusions from Arkansas researchers . . .

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4.  A more recent study on treatment-seeking delay during heart attack was presented at the Canadian Cardiovascular Congress in Vancouver.(6)  .The study’s lead author Dr. Catherine Kreatsoulas and her Harvard-based research team developed the term “symptomatic tipping point” to describe what they had observed about that transitional period between initial symptom onset and seeking medical attention. They identified six transitional stages common to both men and women during a heart attack, although they found that men respond to their symptoms faster than women do.

The six stages, in more or less chronological order, include:

  1. a period of uncertainty (patient attributes their symptoms to another health condition)
  2. denial or dismissal of symptoms
  3. seeking assistance/second opinion of someone such as a friend or family member
  4. recognition of severity of symptoms with feelings of defeat
  5. seeking medical attention
  6. acceptance

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5.  A 2004 study published in the Journal of Cardiovascular Nursing also looked at this treatment-seeking delay behaviour in women heart attack survivors.  University of Arkansas researchers found that women often underestimated the seriousness of their situation particularly when experiencing vague or atypical cardiac symptoms – unlike the findings in the Swedish study cited in #3.  Arkansas researchers also concluded that “beliefs of low self-perceived vulnerability to heart attack” were behind women’s treatment-seeking delay.(7)

In other words, heart attacks happen to other people (e.g. men!) and not to me.

6.  An Australian/American study identified similar reasons for our treatment-seeking delay.(8)  Like the Swedish study in #2, both the Australian and American heart patients studied (about 1/3 female, mean age 60) had a number of factors in common associated with ignoring symptoms, including:

  • lower incomes
  • known diabetes
  • symptom onset while at home
  • considered their symptoms as not serious
  • waited for symptoms to go away
  • worried about troubling others
  • embarrassed about seeking help
But by now, you may be spotting some disturbing similarities among the findings of these six studies, and wondering how many more new studies we really need before researchers and health care providers decide to do something to actually address these findings.
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Emerging research continues to tell us over and over again what we already know:  that, as my irreverent heart sister and survivor of Spontaneous Coronary Artery Dissection Laura Haywood Cory succinctly summed up in her response to my 2011 blog post about that year’s Canadian Cardiovascular Congress:
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“What we don’t need is yet another study that says:

“Sucks to be female. Better luck next life.”

.The common thread throughout each of these studies on women’s treatment-seeking delay decisions is this:

We must call 911 right away

. . . as soon as we start experiencing troubling symptoms that we suspect might be heart-related (or in other words, when we know these symptoms do not feel “normal” for us!)
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YOU KNOW YOUR BODY!

YOU KNOW WHEN SOMETHING IS JUST NOT RIGHT!

 

♥

NOTE FROM CAROLYN: I wrote much more about cardiac symptoms – both common and very uncommon – in Chapter 1 of my book, “A Woman’s Guide to Living with Heart Disease” .  You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 30% off the list price when you order).

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♥

Q: Have you ever downplayed symptoms that later turned out to be serious?
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(1)  FG Kushner et al.  ACC/AHA guidelines for the management of patients with ST-elevation myocardial infarction and ACC/AHA/SCAI guidelines on percutaneous coronary intervention: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Journal of the American College of Cardiology, 2009
(2)  Rosenfeld A et al. Understanding Treatment-Seeking Delay in Women with Acute Myocardial Infarction: Descriptions of Decision-Making Patterns. American Journal of Critical Care. July 2005 vol. 14 no. 4 285-293
(3) Canto JG, Rogers WJ, Goldberg RJ, et al. Association of Age and Sex With Myocardial Infarction Symptom Presentation and In-Hospital Mortality. JAMA. 2012;307(8):813-822.
(4) Rose-Marie Isaksson et al. Older women’s prehospital experiences of their first myocardial infarction. Journal of Cardiovascular Nursing 2013.  Jul-Aug;28(4):360-9
(5)  Karin Hellström Ängerud et al. Longer pre-hospital delay in first myocardial infarction among patients with diabetes: an analysis of 4266 patients in the Northern Sweden MONICA Study. BMC Cardiovascular Disorders 2013, 13:6.
(6)  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, Page S132.
(7)  Lefler LL, Bondy KN. “Women’s delay in seeking treatment with myocardial infarction: a meta-synthesis.” J Cardiovasc Nurs. 2004 Jul-Aug;19(4):251-68.
(8)  McKinley S, Moser DK, Dracup K. “Treatment-seeking behavior for acute myocardial infarction symptoms in North America and Australia.” Heart Lung. 2000 Jul-Aug;29(4):237-47.
 See also:

The symptomatic tipping point during heart attack

Skin in the game: taking women’s cardiac misdiagnosis seriously

Words matter when we describe our heart attack symptoms

“You’ve done the right thing by coming here today”

How having a wife shortens time to heart attack care

Too embarrassed to call 911 during a heart attack?

‘Knowing & Going’ – act fast when heart attack symptoms hit

Why we ignore serious symptoms

Denial and its deadly role in surviving a heart attack

The myth of the “Hollywood Heart Attack” for women

The sad reality of women’s heart disease hits home

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Published by Carolyn Thomas

25 thoughts on “Downplaying symptoms: just pretend it’s NOT a heart attack”

  1. Pingback: Forcryingoutloudgain

  2. I think I had symptoms. My jaws tightened with a dull ache. Dull pain went down the back of my neck into my left shoulder. I asked my husband for help and he told me I was being a hypochondriac. Can you imagine? Shows me how much he is concerned and how kind he is.

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    1. Hi Lori – I hope that the next time these symptoms happen (IF they ever happen again – it’s very possible that they may never happen), you won’t wait for your husband’s (or anybody’s) permission to seek medical help if you truly believe something is wrong.

      When you decide to stay with a man who calls you a “hypochondriac”, and whom you describe as not “concerned” or “kind”, you have to prepare yourself to make your own health decisions from now on – whether he supports your decisions or not.

      Deciding not to seek help for your own symptoms because your husband (or anybody else) doesn’t agree with you means choosing to give your adult power away to another person – and you sure don’t want to do that…

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  4. I was guilty last night! Middle of the night, hours after a particularly strenuous aerobics class, I woke up with left arm and back pain, which I kept willing away. When that didn’t work I took my nitro, rolled over, and fell back to sleep. Luckily, when I followed up today with a blood test the enzymes came back normal. Which isn’t to say what I experienced last night wasn’t cardiac. It just wasn’t dead heart muscle. So that’s good.

    Next time, I’ll go in. Just to be on the safe side — because it feels the same way whether it’s a heart attack or “just” unstable angina! ARG!

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    1. Interesting that you should tell us this cautionary tale, Beth. Because I live with almost-daily episodes of refractory angina due to a coronary microvascular disease diagnosis, I’m now an expert in swiftly scanning each episode, assessing the likelihood that this time it might actually be “the big one” I’ve been fearing, and then ignoring it until it goes away. I’m afraid we can get rather blasé about symptoms that would send most other people screaming straight to the ER! Having unstable angina sucks!!

      But the key here is your nitro: one dose of a patient’s prescription-strength nitro is unlikely to be able to mask symptoms of an actual cardiac event for long. I’ve been told by both my cardiologist and my pain specialist about the nitro rule of three: you can take a second dose if symptoms do not disappear shortly after taking the first, and then you can try a third dose if that second one doesn’t work – but you better be calling 911 while you’re on that third try. Good luck to you!

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  5. Well here I am almost two years away from the second anniversary of the MI!

    Please do as I did and insist on calling 911. Within 15 minutes of knowing I was having a heart attack I was rushed to Emerg by ambulance, having chest x-rays, a catheter and IVs inserted, signing forms and finally waking up less than two hours later from start to finish, in CCU, with a stent and no more pain. It all happened so quickly. It is all a blur.

    Fortunately I live 5 minutes from the hospital. Just before I was discharged from the hospital, I was finally allowed outside my room in the CCU when a stranger walked by and said: “I sure am happy to see you!” I didn’t know her and still do not know if she was a doctor or a nurse. I turned and asked her: “WHY?” She said that when they tried to insert the stent in my right groin they could not access the right coronary artery as it was completely blocked. They then tried the left groin and had immediate success. As they inserted the stent she said everyone in the room clapped loudly and began yelling out “Hurray” and “Yahoo” and other joyous things. She says it was then very noisy and there were very happy staff in that room.

    I think of that story often and it makes me weepy.

    Aw, but now the after effects. I don’t remember any of that but surely it is buried in my subconscious and her story is embedded somewhere in my brain. The difficulty is that one cannot ever forget that brush with death and every time I awake in the night, I imagine I am having another heart attack. Given that many of the symptoms of fibromyalgia pain resemble an MI it isn’t easy to train my brain to differentiate between the two.

    In spite of these nagging worries, my advice is to not dilly dally… forget being embarrassed and call 911. I am alive because of it and on January 19th, I will have a cake with two candles on it. Yes, my right coronary artery is blocked, my heart is damaged, my left artery has a stent – but I can definitely blow out two candles. 🙂

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  6. I’ve told my story so many times, so forgive me if I’ve already told this here. I call myself the Heart Attack Don’t (like the fashion do and don’t feature in magazines). I did everything wrong. Not only did I not wake anyone and tell them that something was wrong, not only did I down play my “back ache” even the next day, not only because I looked up heart attack symptoms and saw every one listed that I had experienced the night before, I stupidly went on living my life for just about 2 weeks until complete respiratory distress finally caused me to go to the Emergency Room.

    I tell women in and out of the hospital as a cautionary tale; do not do what I did. I lost a major part of my heart muscle, could not be stented or bypassed, and function now with an ejection fraction of 14. Call 911 right away!

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    1. Oh, Eve. I too am a Heart Attack Don’t (allow me to steal that phrase, please!) Like you, I spent two full weeks after the initial onset of symptoms “living my life” despite increasingly debilitating cardiac signs. But my (puny) excuse is that I believed the ER doc who had sent me home with a GERD misdiagnosis! Even though I knew perfectly well that pain down your left arm (and finally inability to walk more than five steps) are NOT typical of indigestion, I relentlessly ignored and denied my symptoms until they were truly unbearable. You and I are cautionary tales indeed…

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      1. 3 years ago I was having chest pains feeling like a red hot poker was stabbing me clean thru my chest and out my back. I went to the heart hospital close to my home. They did a ct-scan with dye and basically found nothing and I was sent home. No the blood work didn’t show the enzymes for heart attack either. The cardiologist I saw afterwords said we may never know why I had that stabbing hot poker feeling in my chest. That left a bad taste in my mouth.

        Now, 3 years later, I was having chest pains for 3 days before this past Thanksgiving and my right shoulder was radiating pain to my fingers and up into my jaw. I took myself to the emergency room of the hospital where my husband was treated for his atrial fibrillatin. A different hospital than before. They did a wonderful job with him.

        I was there for 7 hours being checked out. They did nitro 3 times; all that did was give me a headache. Then they gave me some drug that they use for pain and muscle relaxing to see if that helped. It did for about a minute, then the pain was back. They did an echo which showed nothing. They wanted to do a stress test with echo but that department had closed up shop for the holiday. The doc said I was a low risk for heart attack since I don’t have diabetes, or high blood pressure. I told him my family history of my father having 4 strokes, two aneurysms, etc. And he never asked about my cholesterol either. I have high cholesterol and all the statins make me so sick I can’t take them. But he felt I was ok to go home. And I was still having chest pains and shoulder pain.

        So far I feel like I’m getting the short end of the stick. They just don’t care. Last night I suddenly got this horrible chest pain that went all the way thru to my back and radiated out. We did my blood pressure and it was up 143/109 on the left arm and 143/98 on the right arm. I took 4 baby aspirin and two more acid reducers since I was also having some heartburn and that was causing my ears to itch earlier and I had taken two acid reducers then. I wasn’t going back the hospital to be made a fool again. So we watched me and my blood pressure came back down to normal and the pain finally subsided enough so I could go to sleep. Today I’m tired, and my chest still feels weird and I’m having small pains but not like last night. So here I sit writing you feeling like my husband gets better treatment for his heart than I do.

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        1. Hello Karen – I’m not a physician so cannot comment on your specific medical issues, of course. But I can tell you generally that it’s likely not so much that “they don’t care”, and more likely that your test results in the ER did not scream out anything suggestive of cardiac issues. If symptoms return, do not be embarrassed to return to the hospital. Meanwhile, please see your family doctor about your blood pressure.

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          1. Blood pressure is back to normal. It seemed at the time of the pain is when it was high. I was just at the docs 2 weeks ago to have blood work done and my pressure was normal then too.

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    1. Hello Beth – your observation about “smug skepticism” reminds me of a distressing description from one of my Wisconsin readers of her own cardiologist, whom she described as: ““He gave that small, insulting half-laugh that doctors reserve for this response, and said that he wasn’t sure he approved of patients doing research….” * Sigh! *

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  10. I think I call someone I personally know before 911 (or the auto-club for car problems, the plumber for leaks etc) because in moments of confusion/fear/uncertainty my first reaction is connecting with someone who is “familiar”, who cares about me on a personal level.

    As I am totally capable of getting help and making my way on my own in this world it FEELS like an unconscious and almost primordial urge for intimate connection in time of need rather than anything else.

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    1. Makes perfect sense, Judy-Judith! Also reminds me of women’s “tend and befriend” response (as opposed to men’s “fight or flight” response) described in a UCLA study I wrote about here. For example:

      “Oxytocin is released as part of a woman’s stress response. It buffers the fight-or-flight response and encourages us to tend children and gather with other women instead – what’s called a ‘tend-and-befriend’ response to stress.”

      There are, however, those women described in the Oregon study (#1) in the ‘knowing and going on the patient’s own terms’ category: (women wanted to remain in control, were not willing to let others make decisions for them, and openly acknowledged that they did not like to ask others for help).

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  11. As soon as that mini explosive pain hit between my shoulder blades, I knew it was a heart attack. That was the first sign. Then came sweating, pain encircling my rib cage, confusion, panic, pain down my left arm. I immediately called my daughter to say “I think I’m having a heart attack.”

    She told me to call 911 which I did. EMS showed up within 5 minutes & I was on my way to the ER. The 911 operator told me to chew an aspirin but I had none in the house. I now have non-coated 325 mg. aspirin stashed all over the place!!

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    1. Hello Cecilia – interesting that your first call was to your daughter, not to 911, even though you say: “I knew it was a heart attack!” That common response was what the Oregon researchers describe in the #1 study as “knowing and letting someone else take over” (which I did, too – my own daughter was the first person I told about my symptoms, and she too said “Get to Emergency!!”)

      And I too now have full-strength aspirin tucked away in my purse, my car, my gym bag, everywhere!

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      1. I think women are not encouraged to trust their instincts/intuition. That may explain why our calls were to loved ones rather than 911. Also the unreality of “I’m having a heart attack” seems to require some kind of validation. My many subsequent post MI trips to the ER I came to view as major overreaction, but a doc there stated that HE would have totally rushed to get checked out. After all, would it be better to “save face” and die? or get to an ER when scary symptoms occur & be told it’s all OK?

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