Until I had a heart attack, I didn’t know that one of the biggest risk factors for having a cardiac event like mine is having already had one. Heart disease, a chronic and progressive diagnosis, is the gift that just keeps on giving. And as I wrote here, one of the Big Lessons for me has been that, although my doctors can “squish blockages, burn rogue electrical circuits, and implant lifesaving devices” all they like, their heroic efforts do not address what originally caused this damage to my coronary arteries in the first place – likely decades before my heart attack struck. See also: The Cure Myth
In fact, one in four women who survive a first heart attack will die within the following year, most often of cardiac arrest or another heart attack, according to the National Institutes of Health. And women are twice as likely to have a second heart attack in the six years following the first compared to our male counterparts.
No wonder sobering stats like these can drive the freshly-diagnosed heart patient to an exhausting and fearful state of acute hypervigilance.
I was reminded of this while reading a book that my probation officer-daughter Larissa lent me called Emotional Survival for Law Enforcement by Dr. Kevin Gilmartin, PhD.(1) Stay with me, dear reader – this connection actually makes more sense than you might suspect . . .
Dr. Gilmartin, who spent 20 years in law enforcement before becoming a behavioural scientist, was in town recently to lead one of his Emotional Survival workshops for those working in the field. But his definitions of hypervigilance will sound remarkably familiar to most heart attack survivors, too.
First, he describes the inherent usefulness of this physiological response, which is basically meant to help increase our odds of survival by enabling the brain to perceive potential threats before they hurt us.
So if you’re out in the woods being tracked by wolves, for example, hypervigilance is a good thing. For example, it can mean:
- viewing the world from a threat-based perspective
- a mindset that sees unfolding events as potentially hazardous
- increased awareness of all data available in the environment
But these also describe what I and many other patients have experienced after returning home from hospital following our first cardiac event, as I wrote here:
“I was both fatigued and anxious at the same time, convinced by ongoing chest pain and shortness of breath that a second heart attack must be imminent. I felt a cold, low-grade terror on a daily basis.”
Although I no longer live with the same cold, low-grade daily terror, I realized as I was reading Dr. Gilmartin’s book that I still tend to spend far more time in that hypervigilant state than is healthy for me. I suspect that my friends living with cancer, IBS, and many other diagnoses may experience this, too.
Because of frequent bouts of refractory angina, shortness of breath and crushing fatigue that accompany my current diagnosis of Inoperable Coronary Microvascular Disease, almost every day (sometimes several times a day) – I abruptly stop what I’m doing, clutch my chest, and ask myself:
“Is this something? Is it nothing? Should I call 911?”
This kind of relentless hypervigilance not only feels exhausting, it’s a biological state that in itself can be harmful to the body if it becomes chronic.
As Dr. Gilmartin explains:
“The increased level of alertness and awareness of the surrounding environment produces an increased functioning of the sympathetic branch of the autonomic nervous system that controls all of the body’s internal organs and automatic functions.”
These include pulse, respiration, body temperature, blood pressure and other key functions that affect not only our heart health, but our day-to-day decisions.
Dr. Gilmartin has dubbed this phenomenon the “Hypervigilance Biological Rollercoaster®“ and offers these early warning behavioural signs that you may be falling victim to its effects:
- desire for social isolation
- unwillingness to engage in conversations or activities that aren’t related to the “war stories” of your own experiences
- reduced interaction with friends and acquaintances
- procrastination in decision-making
- the “I usta” Syndrome – loss of interest in hobbies or recreational activities
That last item is significant, and although listed in Dr. Gilmartin’s work specifically as a common fallout from working in law enforcement, it can exist among patients living with chronic illness, too.
Dr. Gilmartin describes it as a syndrome that describes what’s been lost from an individual’s life. He says that law enforcement officers typically use the “I usta…” response to inquiries about their own personal lives. For example:
- “I usta jog.”
- “I usta see old friends.”
- “I usta keep my house picked up and tidy.”
- “I usta do crafts.”
- “I usta garden.”
This “I usta” syndrome is the generalized effect of that hypervigilance rollercoaster. All the activities that previously defined the complete human being can now be lost, as Dr. Gilmartin offers in his book:
“But if these other parts of life are lost, a new person emerges, many times a new person without the balancing strengths of multiple dimensions, activities, or roles in life to draw upon for personal perspective and understanding.
“Without this balance, the short-term day-to-day effects of the hypervigilance roller coasters begin to turn into longterm, more damaging losses.”
I don’t know about you, my heart sisters, but I have an “I usta” list that seems alarmingly long.
The reality of my ongoing daily cardiac issues has meant that much of my life is divided into what I was able to do “before heart attack” and now “after heart attack”. No matter how you slice it, the scope of my “after” list remains a much-diminished reality compared to that “before” list.
That’s because debilitating physical symptoms are almost always accompanied by emotional and psychological fallout – an under-appreciated and rarely-acknowledged companion to chronic illness that can indeed make physical suffering feel even worse.
The promising news, according to Dr. Gilmartin, is that we can actually learn how to become emotional survivors no matter where we are right now.
In “Are You A Victim or a Survivor?“, I share more on what I’ve been learning from the wonderful world of behavioural science on how to help ourselves accomplish this.
Q: Do you have an “I usta” list that’s evolved from your own sense of hypervigilance?
NOTE FROM CAROLYN: I wrote much more about how we adjust to a serious diagnosis 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 the code HTWN to save 20% off the list price).
- Kevin M. Gilmartin, PhD. Emotional Survival for Law Enforcement. E-S Press. 2002.