by Carolyn Thomas ♥ @HeartSisters
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 , Lloyd DA. “Lifetime traumas and mental health: the significance of cumulative adversity.” Journal of Health and Social Behavior, 1995 Dec; 36(4):360-76
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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 30% off the list price).
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Q: Have you or somebody you care about been too busy (or too embarrassed) to seek help during a serious medical crisis?
See also:
Too embarrassed to call 911 during a heart attack?
“Knowing & Going: act fast when heart attack symptoms hit
Downplaying symptoms: just pretend it’s NOT a heart attack
Getting help during a heart attack: ‘delayers’ vs ‘survivors’
How women can tell if they’re headed for a heart attack
How does it really feel to have a heart attack? Women survivors tell their stories
Heart Sisters 
I have been having slow onset symptoms for months. I am also on a beta blocker. I have been to the doctor’s numerous times as well as to the hospital. Nothing unusual is found. I believe the doctors can only do so much and are limited in their knowledge of the mysteries of heart disease. I have resigned myself for the time being to being a sitting duck
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Hello Kathy – I don’t know what your symptoms are, and I’m certainly not a physician, but I can tell you generally that *something* is causing your symptoms. At this moment, you just don’t know what that is.
It’s entirely possible that your symptoms are not heart-related. But if your doctor believes this to be true, then what’s second or third on the doctor’s list of possible alternative diagnoses?
I recommend that you start keeping a Symptom Journal: for example, record the date the symptom starts, time of day, how long symptoms last, description/severity, what you were doing/eating/feeling in the hours leading up to the onset of symptoms.
Many women are surprised by what types of patterns are frequently revealed by such a journal – which can then be used as a tool to help you and your physicians figure out a possible Next Step together. The added benefit is that you’ll feel like you’re proactively doing something to help solve the mystery, not just being a sitting duck. Good luck to you…
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So many thanks for your thoughts. I do keep a somewhat sketchy journal and there seems to be no pattern to my symptoms that can provide any meaningful information. At times I do think I may have another problem (and I keep hoping I do) but I have been tested for many other aliments and they all come back negative.
I keep rereading cardiac symptoms and those are the symptoms I have. Tachycardia is the only condition that has been proven through testing and that is why I am on a beta blocker. One thing that I do notice is that I always feel better while exercising, whether it is walking, working out in the gym, etc.
Once I sit down to relax in the late afternoon is when things sometimes start to happen.
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Hi again Kathy – isn’t that interesting about feeling better with exercise? That seems like an important factor to consider! I too have observed this with coronary microvascular disease. Unlike chronic angina (which is chest pain typically brought on by exertion and relieved by rest) in my case, going out for a brisk walk can almost always reduce my own symptoms.
It’s still a puzzle – but at least you know you have one remedy that seems to help.
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I personally believe I have the micro artery problem but I even went to see Dr. Merz who said no.
I found her name in your book. Your book has been very important to me. Thank you again.
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I’m glad you found my book, Kathy – thank you for your kind words. Again, I’m not a physician, but in my opinion, if you’ve been to Dr. Noel Bairey Merz in L.A. and she says it’s not microvascular disease, I would trust her opinion, as I know that she is one of the few cardiologists who has studied ischemic heart disease in women for decades. In other words, I believe that if you had it, she would find it. Having said that, you’re still in this frustrating limbo stage of not having any diagnosis that makes sense to you.
Unfortunately, the reality is that some people go for long periods of time without a definitive diagnosis and straightforward treatment plan. The challenge is: do you still go live your life each day, or do you convince yourself that you’re just a “sitting duck” – a phrase you have originally mentioned?
For example, you’ve already said that, like me, exercise seems to successfully address your symptoms – which seem worse later in the day. I hope you might arrange your day for some little experiments like exercising late in the day to see if that works. I know you will solve the mystery…
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Hi Carolyn,
Good idea about light exercise, and late in the afternoon when I would prefer to relax. I will give it a try.
Unfortunately, I do walk around with an unsettling feeling but I don’t let it cloud my day. I am considering setting up an appointment with a functional medical cardiologist for a more in-depth review of my situation in hopes of getting a real diagnosis.
Thank you sincerely for your interest. You are a magnificent inspiration for women.
Truly,
Kathy
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Thank you for the article. Back in March I started having chest pains filtering to my back on the right. PCP sent me to the ER. Found nothing, ER doc wanted to do stress, my PCP overruled. I saw the PCP a couple more times and the last straw was in late April; she totally ignored me when I told her that they were continuing and a couple were with fevers up to 101.9.
I called my insurance company after researching a couple of doctors to request a change of PCP. He listened. A stress test was fine but I have a moderate amount of fluid building up on my right lung, pleural effusion, and an enlarged spleen. I have RA, so further testing needs to be done of the fluid and a watch for lymphoma which happens with those with RA. I am so glad I switched PCPs. I hesitated since she was my PCP for 5 years, but my health out weighs loyalty.
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Good luck with your further testing to help solve this mystery, Jacquelyn! It is really hard to switch family doctors; a few years I ago I finally had to do the same after 30+ years. Best move I ever made! I went from watching her morph her longtime family practice into a “new” boutique practice specializing in Botox injections. Now I have a wonderful PCP who had spent years working for Doctors Without Borders – quite a difference in philosophy!
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Dear Carolyn,
I am engrossed reading Susan Gubar’s Memoir of a Debulked Woman about her experience as an ovarian cancer patient. It is terrifying to realize that many of the symptoms I had before my first cardiac event are also those “normal” midlife ailments many women feel and are lead to ignore.
Even a nurse, after three months of fatigue, told herself “I am just constipated, or I haven’t been running quite as much, or maybe I need a multivitamin, or I didn’t get a full serving of vegetables this week.”
Gubar writes “How to distinguish the general noise of the midlife or aging body from meaningful signals that portend danger?” About ignoring her own symptoms Gubar says “But I had work to do, miles to go before I slept, responsibilities to shoulder that ought to take precedence over such banal and disagreeable matters. I thought at the time, who wants to be a wimp or a whiner? Just deal with it, I told myself.” And then, there is the guilt for having “allowed” the disease to take over. If you haven’t read it, I really recommend it, given your interest in how the medical establishment doesn’t know enough about illnesses that kill women.
Margarita
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Oh, Margarita! Her observations about “how to distinguish the general noise of the midlife or aging body” are so profoundly important! Thanks so much for recommending this book.
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Hi Carolyn,
I had seen my doctor less then 30 days before having that final massive heart attack. My cardiologist, after receiving my medical records from my PCP, said that I presented with no cardiac symptoms.
Being asthmatic and having a few childhood friends die of asthma attacks, I have always been watchful of my health. That and the fact that I suffered an extreme bladder and urinary tract infection that caused the bladder to bleed from the pressure. Just like my heart attack, it had no symptoms, the last test they ran was nine hours and six specialists later was for a UTI.
I had no symptoms, my PCP did an EKG every time I went in. There was no indication of a heart problem.
Robin
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Hello Robin – these examples help to illustrate how challenging it can be when the diagnostic tests have limited predictive value. As you learned the hard way, a “normal” EKG doesn’t necessarily rule out an upcoming heart attack!
In the remarkable documentary film “A Typical Heart“, a patient Zamira describes a full medical exam scheduled prior to knee replacement surgery (she passed all tests “with flying colours”) followed ONE WEEK LATER by a heart attack caused by five blocked coronary arteries…
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I wrote about a similar issue with reporting side effects during cancer treatment. In the education world, we call it “learned helplessness” because when you are dismissed when you should be validated, you learn to ignore symptoms. Unfortunately this experience seems all too common …
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Thanks for this, Rebecca. Your blog post about learned helplessness is bang on: “I complain about a persistent ache or pain. (Interesting choice of words – complain rather than report. It is in part how I am made to feel when my aches and pains are dismissed..”) Humans adapt to almost anything – even symptoms.
That word “complaint” in medical charts is frequently complained about when patients see it! An internal medicine specialist once described this reaction from her patient: “While I was discussing the ‘chief complaint’, the patient broke in and said, ‘I wasn’t complaining. You asked what was bothering me and I told you.'”
Other commonly-used phrases like “the patient DENIED…” or “the patient ADMITTED…” sound adversarial and belong in a courtroom, not in our medical chart notes.
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