Why hearing the diagnosis can hurt worse than the heart attack

by Carolyn Thomas  ♥  @HeartSisters

Researchers in the U.K. have found that heart attack survivors have a disturbingly high incidence of undiagnosed Post Traumatic Stress Disorder (PTSD).  Terrifying symptoms, invasive procedures, and a life-altering diagnosis of heart disease can inflict profound psychological stress.

But interestingly – no matter the body part involved – it’s the part about hearing the diagnosis that may actually be the most traumatic for us, regardless of the severity of our required medical intervention.

When I was admitted with a heart attack to the Emergency Department (after being misdiagnosed and sent home from that same hospital two weeks earlier), the cardiologist on call told me:

“I can tell from your T-waves and your other cardiac test results that you have significant heart disease.”

Part of me was so stricken by those words that I seemed physically unable to process anything more he said to me before I was taken directly upstairs from the E.R. to the O.R.

Heart disease!

What do you mean, heart disease?

Did he just say “HEART DISEASE”?!?

Hearing this diagnosis was part of what’s known as the disruption stage – the second identifiable stage in models of illness recovery, described by researchers like Morse and Johnson in 1991. These  models apply no matter what the ultimate diagnosis is.  They found that, in general, most people with a serious illness will progress through four stages when facing a catastrophic medical crisis:

  • 1.  uncertainty – we try to understand our condition and its severity
  • 2.  disruption – we realize that we’re affected by a serious disease and may experience high levels of stress
  • 3.  striving for recovery – we may try to gain control over our illness with the help of personal and outside resources
  • 4.  restoration of wellbeing – we attain a new equilibrium as a result of accepting the illness and its consequences

It’s apparently when we hear the diagnosis, during that second stage called disruption, that patients are likely to experience the worst emotional trauma.

At the University of Washington Medical School’s Ethics in Medicine program, med students are taught that patients hearing a serious diagnosis can often recall decades later in exquisite detail how the news of their diagnosis was delivered by their physician, even if they remember little of the actual conversation that followed. Patients also report that physician competence in these situations is critical to establishing trust and reducing anxiety about the future.

Early research on the potential effects of just hearing a medical diagnosis has shown interesting longterm consequences in patients.

For example, the New England Journal of Medicine reported research by Haynes et al back in 1978, observing that Canadian steel mill workers who were found to have high blood pressure through routine workplace screening had increased absenteeism from work that persisted for at least four years after being diagnosed.

Subsequent research published in the American Journal of Public Health found that some patients, after being told that their blood pressure is too high, perceive their overall health to be worse and report more depressive symptoms and lower quality of life. 

And in a 1995 study from the Journal of Human Hypertension, even the close relatives of patients with high blood pressure seemed to be adversely affected by that diagnosis.

Being diagnosed is also what Dr. Hans Selye (the Canadian physiologist whose stress studies guide the modern era) called resistance, which follows the original shock as we try to get our brains wrapped around what’s just happened to us. His explanation of this second stage:

”   Now the person is on high gain, accustomed to the increased flow of adrenaline, consciously appraising what has previously been grasped automatically. For example, at this point the person knows that he/she is a victim, although the person may also be thinking: ‘This can’t be happening to me!’  But eventually, there is a return to some equilibrium in the body, the mind and the community.

“This may be a time of depression and demoralization. The high-energy condition is gone. There is debris. There is loss. There is pain. Reality sinks in.

“This is also the time when the initial attention fades. A survivor who might have been annoyed by too much attention could now feel abandoned and forgotten.”

Dr. Frank Ochberg is a founding board member of the International Society for Traumatic Stress Studies. He also wrote, for the Dart Center for Journalism and Trauma, about how the responses of family and friends can impact this “disruption” stage of adaptation. His observations may sound very familiar to heart attack survivors. For example:

”  Sometimes the responses from others you rely on for support are negative. For example, someone may play down your problems, needs, or pain, or expect you to recover more quickly than is realistic. This is strongly linked to long-term distress in trauma survivors.”

Find out more about Post Traumatic Stress in Not Just For Soldiers Anymore: Post Traumatic Stress After a Heart Attack.


NOTE FROM CAROLYN:   I wrote much more about the adjustment to becoming a patient 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 (use their code HTWN to save 30% off the list price).

6 thoughts on “Why hearing the diagnosis can hurt worse than the heart attack

  1. Pingback: Susannah Fox
  2. This article is right on the money. Just hearing the words “You have ….” (fill in the blank, whatever!) can be a devastating experience that patients remember for the rest of their lives long after we have forgotten all the details of medical treatment and tests that followed those words.

    My late wife never really got over the way the cardiologist broke the news about her congestive heart failure caused by cardiomyopathy. Heart FAILURE – what a word. No wonder patients are so stricken when they hear that word for the first time. What she did NOT hear from the doctor or anybody else while in hospital was that many people do live productive full lives with heart failure – but she took the diagnosis hard, as a death sentence.

    I now believe that this moment of diagnosis was the beginning of the end for her, changing her personality and even her will to live. She lived a diminished & broken life until she died at age 55, nine years ago.

    Thanks for reminding your readers and their doctors about how important communication of a serious diagnosis actually is to the future wellbeing of the patient and their families.

    Liked by 1 person

  3. Hello Carolyn,
    This definition of the disruption stage – “we realize that we’re affected by a serious disease and may experience high levels of stress” – sums up perfectly how I’ve been struggling for the past month since my heart attack Dx. It’s been overwhelmingly stressful, almost too much to get my head around, what all of it means now and into my future. THANK YOU for helping me do this, one day at at time.

    Liked by 1 person

  4. Excellent. Like Eva, I still find myself bouncing around the four stages.

    I especially connect at this point with the phrase, “There is debris.” While I mostly hover between stages three and four these days, there is certainly debris that lingers and jumps up at the most inconvenient times.

    I interpret the debris to be both the emotional response and the physical response/reminder that kicks my ass when I overdo, or sneaks back up on me in the night. I try to pretend this hasn’t happened. My attempts to restore equilibrium lead me to think some moments or even hours that I do not have this disease. I pretend. My family pretends. Then I seem to have to start all over with my family, my friends, my life, again experiencing the shock, the uncertainty, the disruption, the striving and the acceptance.

    Thanks again,

    Liked by 1 person

Your opinion matters. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s