For the freshly-diagnosed heart patient, the immediate and sudden change from “being well” to “recovering” cuts directly to the core of self-concept and self-esteem, according to Dr. Wayne Sotile. He offers a surprisingly familiar list of seven sudden changes commonly observed after a cardiac event. When thinking back on the new reality of my own early post-heart attack days, I was able to tick off his list, point by point. If this had been a midterm exam, in fact, I’d score a perfect 7/7. On his list of seven stressors that newbies often face, how many ring true for you, too?
- strange physical symptoms that leave you feeling out of control of your own body
- a flood of preoccupation with death and, sometimes, overwhelming fear of death
- immediate awareness of a new set of worries about your future ability to resume normal activities and to adjust to any lingering physical effects of this diagnosis
- sudden disruption of customary daily lifestyle, including participation in work, social and family activities
- obsessive questioning about why this illness occurred, what might have been done to prevent it from happening, or what needs to be done now to prevent a recurrence
- dependence on the unfamiliar and often confusing environments of hospitals and doctors’ offices and the people who work there
- taking medications that often make you feel and act strangely
Did anybody else feel that coping with the list he’s describing is a full-time job? Even now, I feel exhausted just reading those items piled on top of one another, all in one place, while vividly recalling going through each one myself – sometimes all crashing down upon me at once! – especially in the early days/weeks/months of recuperation. Suddenly, nothing felt “normal” anymore, and everything in my life had changed overnight.
Dr. Sotile, for over three decades a psychologist at Wake Forest University’s Cardiac Rehabilitation programs, is the author of a number of helpful books for heart patients and their families. These include (my personal favourite) Thriving With Heart Disease, as well as Heart Health and Intimacy: Caring Relationships Aid Recovery.
He describes the seven specific changes listed above as part of the “endless volley of stressors that are faced upon leaving the hospital and attempting to resume a normal day-to-day life”, including this ultimate dose of reality for anyone diagnosed with a chronic and progressive illness like heart disease:
“Rehabilitation is not an event with a clear beginning, middle and ending; rehabilitation is a process that begins with the onset of cardiac illness and lasts for the rest of your life.”
Welcome to the relentlessness that is chronic illness. This is how a chronic diagnosis differs from an acute illness.
Here’s how acute medicine works, as I wrote here:
- Contract an acute illness.
- Go see your doctor.
- Get diagnosed.
- Get better.
- Thank your brilliant doctor.
But chronic illness? No such luck. . .
It’s the gift none of us want to receive, yet the one that just keeps on giving. . .
It’s also why making smarter lifestyle choices after any cardiac event is so important – because having already survived one is in itself a significant risk factor for having another.
Our health care providers hope that the diagnosis of a chronic condition like heart disease will represent a potential wake-up call, or what they also call secondary prevention, therapeutic adherence, or even a teachable moment. Maybe now, they understandably assume, their patients will stop procrastinating in making all of those healthy lifestyle choices they’ve been meaning to adopt.
But just as so many of us learn while tackling New Year’s resolutions each January, making big changes can be challenging.
So just try adding to that challenge the physical and emotional fallout inherent in Dr. Sotile’s seven stressors that accompany a catastrophic diagnosis.
He’s not alone. In a study called Health Behavior Change Following Chronic Illness in Middle and Later Life, researchers found that the vast majority of those diagnosed with a new chronic condition had significant problems adopting healthy behaviours – even after learning about significant evidence that such changes will help them survive. (1)
The study assessed changes in smoking, alcohol use and exercise 2–14 years following diagnosis of heart disease, diabetes, cancer, stroke, or lung disease. Here’s what they found:
- The biggest observed behaviour change was smoking: about 40% of the smokers quit. But that meant 60% of all smokers studied continued to smoke.
- There were no significant increases in exercise for any of the patients in this study, no matter what their diagnosis.
- Overall changes in alcohol consumption were small.
- Researchers concluded that “intensive efforts are required to help initiate and maintain lifestyle improvements among this population.”
Perhaps these researchers should have simply consulted Dr. Victor Montori and his Mayo Clinic-based team working on the novel health care concept they call Minimally Disruptive Medicine. They have astutely identified the under-recognized reality that’s experienced by those living with the “burden of treatment“ – especially among those diagnosed with two or more chronic illnesses. Sometimes, as Dr. Montori reminds us:
“A patient’s education level, literacy, state of depression, pain, fatigue, social connectivity and supports, financial status – all of these affect a patient’s capacity to do the work they’re expected to do. But this workload can simply exceed capacity to cope.”
I vividly remember my first evening at Mayo Clinic while attending the 7th annual WomenHeart Science & Leadership Symposium for Women With Heart Disease, about five months after surviving what doctors call the “widowmaker” heart attack.
That night, following our first (heart-healthy) dinner, about 45 women – every one of us living with heart disease – were asked to introduce ourselves to the rest of our group. One by one, each woman stood up, announced her name, and then recounted some variation of:
“I had three stents implanted after my first heart attack in 2002, then had my second heart attack in 2005 that resulted in two more stents, and then my next heart attack in 2006 that needed triple bypass surgery.”
After listening to the first dozen or so of these introductions, rattled off casually as if they weren’t the multiple catastrophic crises that they must have been at the time, I started to feel a wee bit queasy. I was stricken with a profound sense that life as I’d always known it might be suddenly over.
Is this what would happen to me? Wasn’t one ‘widowmaker’ heart attack enough, for Pete’s sake? I’m stopping at one big fat cardiac event, thank you very much!
But what I failed to grasp at the time was that heart disease is indeed a chronic and progressive disease. See also: The Cure Myth
Our cardiologists can stent or bypass our blocked arteries, or zap our wonky electrical circuits, or replace our flawed heart valves, or medicate our quivery heartbeats, or drug our pain, but they cannot fix what initially caused our heart damage – likely decades earlier.
How often do any of us living with that relentlessness of debilitating symptoms and drugs and worry and treatments and medical appointments and tests and hospitalizations and exhaustion dream longingly about life as it used to be, before we became patients? Before we had to think about living with a diagnosis? Before we forgot what it was like to just feel normal? See also: “To Just Be a Person, and Not a Patient Anymore”
For many of us, surviving a cardiac event means needing to somehow adapt to an avalanche of unfamiliar changes, both physical and emotional. These include the immediate new stressors on Dr. Sotile’s list above, but can also expand to include, as it did for me, no longer being able to continue working (along with all of the financial, social, and grief fallout that can accompany that imposed change). So when you consider that 80% of cardiovascular disease is considered preventable, you might wonder: why doesn’t everybody make changes earlier rather than waiting for a cardiac event to rock our world?
There is simply no downside, after all, to living life as if we are already at very high risk of developing heart disease. Yet most healthy people say they lack the time or the will to follow those cardioprotective recommendations, preferring to wait until we hear a catastrophic diagnosis first.
And as one of my wise readers once suggested:
“You either take time now, or you’ll have to make time later.”
(1) , J et al. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences: (2012) 67B (3): 279–288 October 9, 2011 doi:10.1093/geronb/gbr103
Q: What behaviour changes have you been advised to make since receiving a serious diagnosis?
- Heart disease is a sitting disease
- Your heart health: “Make time now, so you can have time later”
- Are you the quarterback of your own heart health team?’
- Listen up, ladies: 16 things I’ve been meaning to tell you