Why we ignore serious symptoms

~ Carolyn Thomas

by Carolyn Thomas   ♥  @HeartSisters

Before my heart attack, I spent almost two decades as a distance runner. Many of the elite marathoners I knew (and certainly the one I happened to live with!) obsessed mercilessly on every detail of their last race, but not so much on the daily joys of running itself. It was the destination and not the journey that seemed to matter to so many of them, especially during race season.

The members of my own running group could never be accused of being elite runners. Our motto was: “No course too short, no pace too slow.”  But over those decades, whenever my group was in training for a specific road race looming on the calendar, I could watch myself being sucked into that seductive groupthink trap of running even when I was sick, running when I was injured, running because it’s Tuesday and Tuesdays meant hill work, running with an ankle or knee taped and hurting.

Getting to a more important destination (the race) became bigger than paying attention to those less important messages (don’t run today). In fact, I learned from other runners to deliberately mistrust whatever my lazy-ass self was trying to say.  I learned to ignore the messages my own body was sending me.

Every recreational athlete knows that our bodies are sometimes in full combat mode against our minds, dueling over which potential excuse might succeed in avoiding today’s workout: it’s too rainy, it’s too windy, it’s too hot, it’s too cold, it’s too early, it’s too late, I’m too hungry, I’m too full, I’m too tired, I’m too busy, I think I feel a cold coming on . . .

In fact, I now sometimes wonder if that inborn determination to ignore the body’s signals really kicked into gear leading up to my hospitalization for a “widow maker” heart attack in 2008. Two full weeks before I heard the words “You have significant heart disease” from a cardiologist in the E.R, another man with the letters M.D. after his name had sent me home from the same E.R., misdiagnosed with acid reflux despite presenting with textbook heart attack symptoms.

Feeling terribly embarrassed for having made a big fuss over nothing, I went home after that first visit to endure increasingly debilitating cardiac symptoms, day after day after day.  But there was no way I was going back to that E.R. only to embarrass myself again – until finally, no longer able to bear those symptoms, I dragged myself (still worried I was yet again making a needless fuss) back to that same E.R. to beg for drugs for my “acid reflux”.

When I do presentations now about women’s heart health, I offer my heart attack story of misdiagnosis, denial and delay as a cautionary tale. In other words, I plead with my audiences not to be like me:

“Don’t do as I did – do as I say!”

It turns out that my own story is actually a classic example of what Oregon researchers found when they studied women’s “treatment-seeking delay behaviour“ in mid-heart attack. Their important study identified six specific types of this deliberate and potentially deadly delay between the onset of symptoms and the ultimate decision to seek medical help(1). Yes, even when women endure significant cardiac symptoms, we tend to ignore the messages that our bodies are sending us.

In fact, ignoring cardiac symptoms is so common in women during a heart attack that many researchers have devoted years to studying the phenomenon! 

For example, 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) and expressed “beliefs of low self-perceived vulnerability to heart attack.”

In other words, heart attacks happen to other people and not to me.(2) 

An Australian/American study also identified similar reasons that we delay seeking treatment while ignoring heart attack symptoms.(3)  Both the Australian and North American heart patients studied (about 1/3 of those were 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
  • embarrassment about seeking help

All of us have had some experience with feeling sick.  Most of the time, we can shrug it off and with a little “tincture of time”, the sickness or the pain or the symptom somehow goes away without any further  problems. 

I compare this common experience to hearing a weird click/squeal/ping sound coming from a car engine, the kind that seems to vanish as soon as we pull the car into the repair shop. Few of us rush immediately to the doctor – or to the mechanic – as we engage in a bit of wishful thinking while waiting to see if the pain or the pings will go away on their own. However, just like our vehicles, our body’s aches and pains sometimes do get worse over time – or, as in my case, signal a much larger underlying health crisis.

There are three basic indicators that something isn’t right when it comes to cardiac symptoms.  These signs can occur in both men and women:

  • chest pain that does not go away, or goes away and comes back later (Ed. note: remember that up to 40% of women do NOT experience any chest symptoms during heart attack)
  • varied shortness of breath
  • any upper body pain between neck and navel that has never occurred before

If you experience any of these symptoms, he says, you should call your doctor or 911 immediately. For even more specific examples of heart attack symptoms – particularly for women – read Am I Having A Heart Attack?

People in my women’s heart health presentation audiences often ask me now why I waited those two fateful weeks to seek medical help, despite suffering truly dreadful and worsening daily symptoms like central chest pain, nausea, sweating, and pain radiating down my left arm. Although the excuse seems crazy now, at the time I was busy “normalizing” my symptoms each day.  This was, I told myself, simply what acid reflux must feel like.

When symptoms hit, I learned to stop what I was doing and stay motionless for 20 minutes or so until they began to ease up. Towards the end of that fateful two-week period, I was no longer able to walk more than five feet without needing to stop because of the chest pain.  And even though at some level I knew that pain radiating down my left arm is most certainly not a symptom of acid reflux, denial allowed me to somehow dismiss the reality of pretty obvious cardiac symptoms.

So I kept popping Gaviscon and Tums while cursing this damned indigestion that seemed to be getting worse and worse by the hour.  But during those two weeks, I also continued to walk, talk, go to work, drive the car, meet friends for dinner, and I even flew halfway across the country to help celebrate my mother’s 80th birthday.

In short, I just kept on keeping on, the way runners do when facing a steep hill or shin splints or a snowstorm or heel blisters. You just run through it. Run through the pain. Keep on going – as I learned to do while training for my first half-marathon.

But learning to ignore those sneaky little lazy-ass messages that are trying to keep us from our next run, ride or workout just might be the slippery slope in ignoring very real messages the body is trying desperately to send us one day.

Yes, even heart attack messages.

♥

I wrote more about treatment-seeking delay in Chapter 2 of my new book, “A Woman’s Guide to Living with Heart Disease”  (Johns Hopkins University). You can ask for this book at your local library or bookshop (please support your favourite independent family-owned shop!) 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 when you order).

..

(1)    Rosenfeld A, Lindauer A, Darney B. “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.
(2)  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.
(3)  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:

On being a (former) runner (my essay in Runner’s World)

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

Denial and its deadly role in surviving a heart attack

When routine tasks trigger heart symptoms

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

How to communicate your heart symptoms to your doctor

Women missing the beat: are doctors ignoring women’s cardiac symptoms?

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

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Q:  Have you ever tried to ignore serious medical symptoms?

Published by Carolyn Thomas

13 thoughts on “Why we ignore serious symptoms”

  1. I call myself the “Queen of Denial”, or the “Heart Attack Don’t” because I did everything wrong. I thought I was the only one that waited 2 weeks to seek medical treatment. I “pulled my back out”, or so I thought. Even though I checked the internet the next morning and saw every single symptom listed under Heart Attack signs. How I could possibly deny it after reading it online, I don’t know.

    But, I was afraid to go to the doctor or even to the ER, not only did I not want to embarrass myself. I kept away because I couldn’t afford to be sick. At the time, I only had Catastrophic Insurance Coverage, which a Heart Attack certainly would have counted, but I still stayed away. I was terrified about the cost. So, I never even woke up my husband at the time. He’s now my almost-ex, but that’s a whole other story.

    Instead, after resting for a few days, I resumed working, driving and even hosted a dinner party. By the second week, I developed a cough and thought I had Bronchitis because, of course, you always get sick when you’re down. By the time I finally went to the ER, I was in complete Respiratory Distress and was told that I might be having a “second heart attack”. Whoa, when did I have a first one, I asked?

    Of course, there was barely any time for any answers or any more questions,because all hands on deck and I was whisked into an OR. I say that I was lucky, because even though a Catheterization wasn’t possible and a ByPass wasn’t an option anymore (not enough viable heart muscle to bypass to), I survived! I was briefly on the Heart Transplant list, but taken off of it because I have responded to medication alone so well. But, if ANYTHING else happens, I’m back on a transplant list, that is IF I survive.

    I do what I do today, volunteering and telling my story to anyone that will listen in the hopes to convince even one woman to not ignore her symptoms.

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    1. Hi Eve – what a story! Re your cough: I was at an all day board-management retreat at the hospital where I worked the week before my MI and when our head nurse heard my barking cough during the meeting (sounded like coughing up a lung) she told me later that it sounded like what she called a “cardiac cough”). Your reluctance to go to the ER due to your limited insurance coverage is tragic. It’s hard enough to convince women even with textbook symptoms to seek immediate help, but throw in being “terrified about the cost” and you have a recipe for a very bad outcome. You dodged a bullet for sure, Miss Eve. Keep up the great work.

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  3. Carolyn,
    What a great piece of writing and so informative for men and women alike.

    I can completely relate to your ‘run through the pain’ mentality as I am the same way. I can certainly find excuses similar to yours for not going to my dance classes, but the will to go to experience that joy, to be with my dance girlfriends, usually wins out.

    You brought up an important point about how we as women ignore signs from our own bodies. I took note as I read your post.

    Also interesting, and probably common, was your misdiagnosis of acid reflux. I understand completely how you would go with that diagnosis and barrel through the symptoms with the ineffective medications. Been there. With ten misdiagnoses for my chronic pain condition, I went with several misdiagnoses and treatment plans that were completely ineffective because I had hope or I believed the physician was correct. I’m not a doctor so…..

    I’m glad you persisted and went back to the ER. You saved your own life. Sometimes all it takes is trusting our instincts and acting on them.
    Thanks for a great post.
    Martine

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    1. TEN misdiagnoses! How awful! But of course you would accept all those treatment plans – because people who’d been to med school advised you to do so.

      I now encourage the women in my heart talk audiences to learn to trust those instincts you mention. You know your body. You KNOW when something is just not right. Listen to those instincts – but even more important, as you say, ACT on them.

      Thanks so much for sharing your own story here, Martine.

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  4. You are talking my language here – all of you. I was brought up to wear a smile and reply to, “How are you?’, with, “Very well thank you”, regardless of reality.

    At age 47, I fell asleep twice during my break at work (as an RN!), was never comfortable sitting down unless I had my feet up, and was tired all the time. During a routine annual physical, my GP heard a heart murmur so concerning that I couldn’t leave her office until I had an appointment with a cardiologist.

    Long story short: My mitral valve needed to be replaced, and was. During that surgery it was noted that my tricuspid valve was damaged. I had open heart surgery again eleven years later to replace my mitral valve. My heart damage was such that I haven’t been able to work since the second time I fell asleep at work, in 1999.

    I have been on Coumadin (warfarin) since my first heart valve was replaced, to prevent blood clotting on the artificial valve(s). Most of that time I have managed my own dose of Coumadin, using my own meter and strips weekly to test my INR (blood clotting), much like testing blood sugar, and adjusting my dose accordingly. Lots of things can affect my INR, but the most obvious substance is alcohol. I can usually have a drink or even 2 in a week without much effect, but more than that and my INR will increase. That means less clotting, more bruising, and for me, spontaneous nose bleeds that can take time and rest to stop.

    Last August, my husband and I were camping after selling our house and before getting possession of our new condo apartment. Suddenly I was not able to walk the dog the 2-3k I had done in the city, I was exhausted after about 50 feet. I rationalized it as going from a flat city street to a hilly area. Just before we got possession of our new home, I lowered my dose of Coumadin to allow for the champagne we had bought to celebrate our move.

    On possession day, when I tried to get up, I was so dizzy, I couldn’t get up or get dressed without help. I thought I had low blood sugar so I had some breakfast (served to me), and my husband helped me to the car. It was also an extremely hot day. At the apartment, my husband steadied me as we went in, but I couldn’t do the “walk-through”. I sat on the kitchen floor. The next day the movers came and I had to sit on a chair and point directions for them. I blamed the extreme heat for my dizziness and exhaustion. I had no champagne because I was already so dizzy.

    Two days later when I was still too dizzy to walk unaided, extremely hot, and exhausted, I realized I was short of breath, even after sitting with my feet up for a couple of hours. I finally told my husband that I was sicker than I had let on, and asked him to drive me to the hospital and drop me off at the ER. I’d call him and let him know when to pick me up or if they were going to keep me overnight. Oh, and to not wait up for my call because I might be waiting for hours.

    It turned out that I had big clots on both artificial heart valves, was lucky not to have had a major stroke, indeed to be alive. I am very fortunate to have left the hospital intact, with the clots dissolved, nearly three weeks later.

    The theory is that I had a small pulmonary embolus that caused me to suddenly not be able walk the dog. When I took less Coumadin in anticipation of drinking, my INR went too low, allowing the clots to rapidly form and grow on my valves. I was treated with a clot-buster drug and high dose Heparin, both by IV, in the CCU, after much deliberation (instead of emergency open heart surgery to replace both valves). I saw the stroke team and neurologists as well as many cardiologists and their residents and students. The common question was, “Why did you wait so long to come to the hospital?”.

    Besides all of the above rationalizations, I hate moving and hadn’t moved for 17 years. I was afraid I was having psychosomatic symptoms because we were moving. I didn’t want to go to the hospital and be embarrassed to be told there was nothing wrong with me. I only took it seriously when I started to have a lot of trouble breathing.

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    1. Jennifer, you are the Poster Child for the “I’m just fine, thank you!” response to serious cardiac symptoms! The fact that you’re also an RN likely made your treatment-seeking delay even more puzzling to those around you (as if you of all people should have known better) but your story also illustrates how different it is when symptoms are happening to US than to someone else. Thanks so much for sharing your story here.

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      1. A cardiologist commented to me that nurses were terrible about getting to the hospital when they needed to, while the nurse beside her nodded.

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  5. Oh my goodness. This resonates. I think a lot of it is also cultural. I come from a family background where we were taught – through example – to soldier on through adversity.

    Some of that came from my dear dad whose experience in WW II lead him to just “keep on keeping on”, no matter what, for the rest of his life. But my mom was like that too.

    The best way to address an unusual situation was: Don’t complain, suck it up, and if you feel unwell take an aspirin. My siblings and I are learning later in life how risky that behaviour can be.

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    1. Hi Deborah – did you and I grow up in the same family?!?

      My own Dad’s favourite sentiment was this one:
      “Don’t tell your friends about your indigestion
      ‘How are you?’ is a greeting – not a question!”

      Unless there was blood and lots of it, it was simply the rule not to make a big fuss or draw unnecessary attention to yourself. You’re so right – as adults, we now need to unlearn those lessons.

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  6. I am aware of my thinking that the forward projection of my life would have to stop on a dime and all my plans and thinking would have to be frustrated if I “gave in” to symptoms. Also, other people’s lives would be interrupted, too.

    Until the nurse I was seeing asked if I was having a low blood sugar because she saw me downing what she thought were glucose tablets. No, they were Tums, and I was soon on my way to the emergency room, needing two stents in the LAD and RCA. I know for sure that, otherwise, I would have “bulled through” my day.

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