In the wonderful world of cardiology, we know that “time is muscle”. The faster a person in mid-heart attack can get prompt and effective treatment, the greater the likelihood of saving that heart muscle, and of survival itself. As Yale University researcher Dr. Angelo Alonzo has suggested, the weak link in the chain of events leading to prompt and effective cardiac treatment is often patient delay in seeking care (which I’ve written about lots because I was so good at this myself: here, here and here, for example). Ironically, even having “knowledge of symptoms or risk factors” does NOT decrease this pervasively common treatment-seeking delay behaviour. .
What this means is that urging women to seek the same care for ourselves that I know we would loudly demand for our daughters, or our Mums, or our friends experiencing identical symptoms apparently doesn’t make any difference in whether or not we will personally delay seeking help in the middle of our own frickety-frackin’ heart attacks.
Why this delay?
My own case is a two-part cautionary tale: at first, I didn’t delay seeking help at all, and then I did – for two full weeks.
After my first alarming symptoms hit while out for an early morning walk, I went immediately to the Emergency Department that was only a few blocks off my walking route. That was the right thing to do! My textbook heart attack signs (central chest pain, nausea, sweating and pain radiating down my left arm) were misdiagnosed, however. (“You are in the right demographic for acid reflux!”). I was sent home, supremely embarrassed for having made a big fuss over nothing.
I felt particularly embarrassed because of what the Emergency nurse had said to me while we were waiting for the results of a second cardiac enzyme blood test (the first had been “normal”, just like my EKG and treadmill stress test had been).
Apparently already convinced that I was wasting their time, this nurse sternly scolded me:
“You’ll have to stop asking questions of the doctor. He is a very good doctor, and he does NOT like to be questioned!”
And the question I had dared to ask that physician?
“But doc, what about this pain down my left arm?”
I’m not a doctor, but even I knew that pain down your left arm is NOT a sign of indigestion.
But after the nurse’s scolding, I felt like my face had been slapped. I was humiliated. I couldn’t get out of there fast enough. As soon as the second cardiac enzyme test came back “normal”, I slipped off that gurney and left the building as quickly as I could, apologizing all the while for being a bother.
And worse, when my symptoms soon returned, there was simply no way I was going to go back to that Emergency Department.
After all, a man with the letters M.D. after his name had told me quite confidently, “It is not your heart!” – followed immediately by a woman with the letters R.N. after her name who had sternly warned me that I was being “difficult”.
Dr. Alonzo’s research suggests that having one’s symptoms dismissed or misdiagnosed like this may have a profound effect on our future decisions to return to the people who have dismissed or misdiagnosed us.
This phenomenon, he says, is known as cumulative adversity: (1)
“People may delay a bit longer, wanting to make certain that the event is real, wanting to avoid potential embarrassment, not wanting to repeat the same experiences, and not wanting to burden family or friends if unwarranted (e.g. not crying wolf).
“All of these factors may conspire to delay subsequent heart attack care-seeking.”
By the time I forced myself back to that same Emergency Department two weeks after my first visit, I was desperate. My symptoms had become unbearable, my cardiac diagnostic tests clearly showed I was having a heart attack, a cardiologist was called in, and I was finally correctly diagnosed and immediately treated for what doctors call the “widowmaker” heart attack.
But meanwhile, I had unknowingly become one of the heart patients that Dr. Angelo Alonzo has been studying for over 40 years. For example, when he and his colleagues wrote the Scientific Statement on Reducing Delay in Seeking Treatment by Patients With Acute Coronary Syndrome, published in the American Heart Association’s cardiology journal, Circulation, he cited research suggesting that patients who assess their symptoms as relatively benign are more likely to delay seeking treatment.
That was exactly what I had done. After feeling embarrassed, humiliated and finally dismissed with an acid reflux misdiagnosis, I quickly assessed my own symptoms as “benign”. Worse, I now doubted my own competence to even tell the difference between serious cardiac symptoms and simple indigestion. See also “You’ve done the right thing by coming here today.”
So I interpreted all of my future symptoms as not serious. Distressing maybe, but benign. My stubborn refusal to return to the same Emergency Department where I’d felt humiliated was a horribly dangerous decision.
Yet, like many women, I was quick to dismiss my ongoing concerns – because that Emergency doc had also dismissed them.
Besides, I could walk and talk and think, drive my car, go to work, spend time with my family and friends, even fly to Ottawa for my mother’s 80th birthday celebrations – does that sound like somebody having a heart attack? See also The slow-onset heart attack: the trickster that fools us
Life just went on, day by day, as full and busy as ever, despite these increasingly troubling symptoms.
Meanwhile, Dr. Alonzo was studying women like me. He told me much later that he once gave a talk about his research that he called ‘Who Is Going to Feed the Canary?’
“It’s a reference to the fact that, even in mid-heart attack, we are so embedded and invested in our daily lives that we are very, very reluctant to just drop everything and seek medical care.”
Based on this work, Dr. Alonzo discovered reasons for our alarming reluctance to ‘drop everything’ – even for something as serious as a heart attack :
- we have to be certain it is a real problem
- we have to finish the task at hand
- we need to make arrangements if we end up being hospitalized
- we have to cancel appointments
- our work activities are very important!
- we are too strongly tied to our social obligations to just leave them
- we have to make sure we are clean for a doctor visit
- we do not want to bother others
- we do not want to bother the hard working doctor
- we do not want to be taken out of our office or home by emergency personnel by ambulance
For far too many people, he added, it’s only when the cardiac symptoms become overwhelming that we finally agree to seek and accept medical help.
When I was at Mayo Clinic for my Science & Leadership training five months after surviving that heart attack, I met a woman who had been sent home three times from Emergency, despite having Hollywood Heart Attack symptoms much like my own.
But she was much smarter than I was. Unlike me, she kept going back to Emergency. And every time she went back, she said the same thing:
“I don’t care what you say. I know that something is wrong with me!”
On her third visit to Emergency, she was told to consider taking anti-anxiety meds. On her fourth visit, she underwent double bypass surgery.
If only all of us were as tenacious as that woman. She had just saved her own life by ignoring her embarrassment and demanding emergency help.
Be just like her.
Don’t be like me.
Don’t be, as Dr. Angelo Alonzo describes it, “embarrassed to death.”
- Turner RJ(1), Lloyd DA. “Lifetime traumas and mental health: the significance of cumulative adversity.” Journal of Health and Social Behavior, 1995 Dec;36(4):360-76
NOTE FROM CAROLYN: I wrote much more about treatment-seeking delay behaviour (Chapter 2) and misdiagnosis (Chapter 3) in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (where you can use the code HTWN to save 20% off the list price).
Q: Have you or somebody you care about been too busy (or too embarrassed) to seek help during a serious medical crisis?
Image: Gerd Altmann, Pixabay