“Be alert to both the absence of normal as well as the presence of abnormal”

by Carolyn Thomas      @HeartSisters

It isn’t often that I’m wide awake at 1 a.m. But sometimes, a dream or a fire truck siren or whatever jolts me so wide awake in the middle of the night that sleep seems suddenly impossible. When this does happen, I’ve learned that I can sometimes lull myself back to sleep by turning on my bedside radio. (Radios! Remember those?)  My old clock radio is tuned permanently to CBC, our national Canadian broadcaster. And 1 a.m. is when CBC runs the Public Radio International program called “The World” . I love that show.

It isn’t often that I hear something on The World so perfectly applicable to women’s heart attacks that I’m moved to sit up in bed, grab a Sharpie and the little stack of post-it notes beside said radio, and quickly scribble down the words before I forget what’s just been said. But this was one of those times.         .    .   

Host Marco Werman was recently interviewing Retired Army Lt. Col. Alexander Vindman about his new book, “Here, Right Matters: An American Story.”  He asked the former National Security Council aide about testifying during the impeachment trial of Donald Trump, and specifically to comment on this phrase during that testimony:

“Be alert to both the absence of normal, as well as the presence of the abnormal.”

That statement referred to Vindman’s military deployment to Iraq in 2004 – not to women’s heart disease – but the words beautifully sum up my own persistent advice to women who suddenly experience frightening cardiac symptoms.

Let me explain: we know from many emerging research studies (here, for example) that women are significantly more likely to be under-diagnosed in mid-heart attack, and – worse! – under-treated even when appropriately diagnosed compared to our male counterparts. Other studies point to medicine’s implicit bias as a significant barrier to guideline-based treatment of women’s heart disease. As I like to say, men do not have to beg to be believed when they report their  heart attack symptoms. 

We also know that women take far longer than men to seek help, even in mid-heart attack while experiencing severe cardiac symptoms.

As I quoted Mayo Clinic cardiologist Dr. Sharonne Hayes last week from her Best Health interview about younger women experiencing a heart attack caused by Spontaneous Coronary Artery Dissection (SCAD): 

“The challenge still is this younger group of patients, some of whom go in literally saying, ‘I have an elephant on my chest, and pain radiating to my jaw and down my left arm, and I threw up.’ You cannot make up more classic heart attack symptoms – yet they are sent home.”

And once you are sent home – despite textbook Hollywood Heart Attack symptoms! – it can be impossibly tough to go back to seek help.  This is why hearing the words “You’ve done the right thing by coming in today” – especially in response to “normal” cardiac diagnostic test results (not uncommon in women) – can mean the difference (sometimes the actual life-or-death difference) in confirming to heart patients what I’ve been telling them:

“You know your body. You KNOW when something is just not right.  Ask yourself, ‘What would I do if these symptoms were happening to my Mum, or my sister or my daughter?’

“You’d be screaming blue murder to get immediate and appropriate help for those you love. You MUST persist in making that same decision to get help for yourself.”

It’s often tempting to minimize our symptoms, hoping that they might just get better on their own.

That’s makes as much sense as trying very hard to ignore the loud new pinging noise coming from our car engine. Maybe it’s nothing. I think it’s not as bad as it was yesterday. Maybe it will be gone by tomorrow.

Yet we know what the “absence of normal” feels like.  New chest pain that gets worse when we climb stairs – that’s not “normal”. New shortness of breath that makes it impossible for us to bend down to tie our running shoes – that’s not “normal”. Feeling suddenly so fatigued that we’re no longer able to lift the laundry basket – that’s not “normal”.  Newly diagnosed heart attack survivors often report that they felt “a sense of impending doom” leading up to their decision to seek help.

These may or may not be cardiac symptoms, but if they persist or worsen, we have to stop excusing them as “normal”. Cardiologists like to say, “Time is muscle”. Cardiac symptoms that indicate something is preventing normal blood flow to the heart muscle must be investigated – and the sooner the better to avoid permanent heart muscle damage.

Sometimes this delay in seeking medical help, as in my own case, is clearly because a woman has already been misdiagnosed and sent home at least once (despite my textbook symptoms of central chest pain, nausea, sweating and pain radiating down my left arm).  Once an Emergency physician dismisses your symptoms as just stress or anxiety or acid reflux or menopause (a terrific all-purpose misdiagnosis, by the way), it’s near impossible for the average woman to force herself to return to that same Emergency Department as symptoms worsen. After all, when a person with the letters M.D. after his/her name tells you quite confidently, “It’s NOT your heart”, you tend to believe that pronouncement.

In my case, even the Emergency nurse at my bedside scolded me after my misdiagnosis, sternly warning me to stop asking questions of the doctor:

“He is a very good doctor, and he does NOT like to be questioned!”   

I felt so humiliated, I couldn’t get out of that building fast enough.  The question I had dared to ask the doctor?  “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 acid reflux.

Yet far more importantly, I WANTED to believe the misdiagnosis. I’d much rather have indigestion than heart disease, thank you very much.

Nobody wants to further embarrass themselves by returning to that same person, the one who has already sent you away, or made you feel like you were making a fuss over nothing. So women, significantly more often than men, tend to engage in what researchers call treatment-seeking delay behaviour  – yes, sometimes despite severe symptoms. Most studies report consistently similar findings behind these dangerous decisions to delay getting help even during alarming cardiac symptoms, such as:

  • knowing and going on the patient’s own terms (women knew something was very wrong, but 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 )
  • minimizing (women tried to ignore their symptoms or hoped the symptoms would just go away, and did not recognize that their symptoms were heart-related)
  • 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)

Harvard researcher Dr. Catherine Kreatsoulas calls this last process the “symptomatic tipping point” – that unbearable last straw that finally propels women to seek help during a heart attack. I once asked her about this problem of women’s treatment-seeking delay behaviour, and specifically what had surprised her most about what she and her team had learned. Her answer:

“We were surprised that, while men and women were equally likely to seek medical attention for their symptoms if they felt physically limited by their symptoms, if they felt a change in the severity of their symptoms, or if they experienced a long duration of symptoms, women wait for symptoms to become MORE severe and MORE frequent than men.

•       “We were also surprised that when patients finally did come to the hospital, 1/3 of women still thought the symptoms were NOT related to their hearts.

•       “Even more surprising, when we asked patients on their way to undergoing their diagnostic angiograms, women were significantly less likely to think that their symptoms could be due to their hearts compared to men. Women also displayed more of an optimistic bias, feeling that the symptoms would pass and get better on their own.”

So taking a page from Vindman’s book, I would again remind women who find themselves experiencing distressing symptoms that YOU KNOW are just not right to pay close attention.  Pay attention to what does NOT feel normal for you, and pay attention to what feels definitely ABNORMAL.

If you are experiencing troubling symptoms that you genuinely believe to be heart-related, please do the following:

  • Call 911 immediately.
  • Do not drive yourself to hospital, and do not let anybody else drive you unless absolutely unavoidable.
  • Unless you’re allergic or have been told not to, chew one full-strength uncoated aspirin while you’re waiting for the ambulance (you can drink water with it – chewing just dissolves it faster so it’s absorbed faster).

“Be alert to both the absence of normal, as well as the presence of abnormal.”

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Statue image: Marisa04, Pixabay

NOTE FROM CAROLYN:  I wrote much more about women’s treatment-seeking delay behaviour in my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for this book at your local bookshop (please support your neighbourhood independent booksellers!)  or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (BOOK SALE! Until September 7, 2021, use their code HLAB to save 30% off the list price when you order).

AND ANOTHER NOTE!   If you are experiencing distressing symptoms, please do NOT leave a comment here asking if they might be heart-related or not. I’m NOT a physician so cannot advise you on your specific circumstances. See a medical professional for expert help.

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Q:  Was there a “symptomatic tipping point” for you that convinced you to get medical help during a health crisis?

 

See also:

Am I having a heart attack? (a comprehensive list of heart attack symptoms in women, as well as symptoms that are less likely to be heart-related) 

Denial and its deadly role in surviving a heart attack

Why we ignore serious symptoms

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

This is NOT what a woman’s heart attack looks like

What is causing my chest pain?

7 thoughts on ““Be alert to both the absence of normal as well as the presence of abnormal”

  1. Hi Carolyn,
    The thing that people don’t listen to is I had been reporting my issues every time. They happened when my PCP did a 12 lead EKG that showed no signs of a heart problem. My waking up at 4 or 5 in the morning because I stopped breathing was put on COPD asthma induced and a new steroid was prescribed.

    My PCP was totally shocked as she was doing the test within 24 hours of the episodes and they said ‘normal’. In fact the EKGs were done in less then 8 hours of the episodes. I was given inhalers to restore my breathing. No one ever looks at other health problems that could mask a heart attack. But since my heart attack, I have to have both cardiac and pulmonary clearance before they can let me go home. If anything is the slightest bit off, I’m kept for a 48 to 72 hour observation period.

    My cardiologist said that they have added new guidelines for women because if I had been seen by him in the ER, he too would have sent me home. My size and physical appearance were very misleading and my being asthmatic masked the cardiac conditions.
    Robin

    Liked by 1 person

    1. Hi Robin – as I like to say, so much of medicine is just figuring out what the problem is NOT, until eventually by the process of elimination (if we’re lucky and the clinician is experienced, the culprit is finally identified.

      If for example, a person reports shortness of breath symptoms which are already a symptom of pre-existing asthma, it can make perfect sense to conclude that those are likely signs of an existing diagnosis. It’s why taking ALL symptoms, both familiar and weird, is so important to un-masking the condition.

      Take care, stay safe. . . ♥

      Like

  2. Because of my diagnosis of HCM ( Hypertrophic Cardiomyopathy) I have frequent bouts of low level chest pain and mild shortness of breath …. So differentiating ABNORMAL cardiac symptoms is often difficult.

    Two situations come to mind in answer to your question:
    1) I developed distinct pain between my shoulder blades that I had never had before and it increased with walking. This lead to scheduling an angiogram and getting a stent .

    2) After a full day of low grade chest pain, I popped an extra dose of Verapamil and went to bed. I woke up several times during the night and had a BP of 85/50 when I left for work. (Yes, really, I thought it was just the extra Verapamil) …My symptomatic tipping point came when a co-worker said “You look awful, you’re grey and pale You really should go see a doctor.”

    I left the hospital where I was working, walked a block to my doctor’s office and was promptly sent back to the hospital in an ambulance. Angiogram showed TakotSubo or Stress Cardiomyopathy with a huge clot in my left ventricle with 30% EF.

    Liked by 1 person

    1. Hello Jill – two excellent examples of how to decide whether emergency medical help is required!

      The researchers who study women’s treatment-seeking delay behaviour specifically list a reason that I’m reminded of by your co-worker story: what they call “knowing and letting someone else take over” (e.g. women told someone they had symptoms and were willing to go along with recommendations to seek immediate medical care). Your astute co-worker deserves a big hug for that nudge that convinced you to get help!

      Take care, stay safe. . . . ♥

      Like

      1. Maybe that is the same principle that applies to my getting a sleep study …

        I had one 5 years ago, My ego is convinced I don’t need it. But my cardiologist has suggested it several times… now two other doctors are supporting his suggestion….I surrender!!!

        Liked by 1 person

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