by Carolyn Thomas ♥ @HeartSisters
In Dr. Wayne Sotile’s very useful book for all freshly-diagnosed heart patients called Thriving With Heart Disease, he nails the description of what he calls the patient’s “homecoming blues“. It’s that need to adjust from being cared for 24/7 in hospital following a cardiac event to suddenly being booted out the door and sent back home. For example:
“You’re now home from the hospital, and you’re expected to surf a bewildering wave of emotions, anxieties and procedures.
“Moving very slowly, bouts of depression, weeping, social withdrawal or obsessive anxiety about dying – these are all normal during the early stages of heart disease.”
Normal or not, I found “obsessive anxiety about dying” to be an extremely unpleasant way to live in the days following my own heart attack.
For example, I became convinced that I would likely have another terrifying heart attack – but this time fatal, and while I slept.
I manifested my conviction in this way: every single night, before brushing my teeth and falling exhausted into bed, I tidied every square inch of my home. I cleaned counters and swept floors, scrubbed the toilet, emptied recycling bins – all to make the place sparkle in case the paramedics (or worse, my grown children) had to come in and discover my corpse next day. Every night, I was unconsciously preparing for my death. The upside of obsessive anxiety: the apartment had never looked so good.
Yet this kind of anxious ruminating can often morph into a chronic and exhausting state of hypervigilance, as we discussed at length here last week. And even successfully surviving weeks, months or years without dying as planned yet may not prove that death is not after all imminent. Not only is hypervigilance not conducive to feeling happy, productive or “like my old self”, but it can actually be harmful for our overall future health.
Even staying alive may not reassure us, as every new sudden twinge or frightening symptom can make us pause and wonder: “Is this something? Is it nothing? Should I call 911?”
In the early days, weeks and months following my heart attack, I continued to experience this as what I called a “cold, low-grade terror” – day after day after day. See also: The New Country Called Heart Disease
This hypervigilance is what behavioural psychologist Dr. Kevin Gilmartin describes as “an increased level of alertness and awareness” of one’s surroundings. For patients diagnosed with one of many forms of chronic illness, however, hypervigilance can also include an increased level of alertness and awareness of every physical or emotional change within.
In his book Emotional Survival for Law Enforcement, Dr. Gilmartin addresses issues like hypervigilance among those who work in the field.(1) In police work, he explains, officers must learn to perceive the world as potentially hazardous in order to survive the streets.
Heart patients don’t patrol the streets, but we do share many of the characteristics that can also lead to hypervigilance. For example:
- Every day, law enforcement officers are exposed to a series of unknown events, any one of which could be perfectly harmless or lethally dangerous. Heart patients experience their cardiac symptoms as a series of unknown events that could be perfectly harmless – or could be the ones that signal yet another cardiac emergency.
- Every day, officers have to guess which of these events are safe, and which are lethal. Heart patients, too, must become able to assess which disturbing symptoms mean it’s time to call 911, and which are merely signs of benign angina.
- Every day, officers have to figure out the difference by reading unknowns. Every troubling cardiac symptom that a heart patient feels is also an unknown.
Dr. Gilmartin addresses some of the ways that hypervigilance can be addressed.
This starts with a basic dilemma: whether the individual identifies with being a victim or with being a survivor. The difference is:
“Victims focus on what they do not control. Survivors focus on what they do control.”
The “poor me” victim mentality can be deliciously seductive for heart patients, especially when we recall LBCE (Life Before our Cardiac Event) and all that we’ve lost since then. We may recall how we used to take good health for granted. We may recall that we never needed to take pills and rarely had to visit a doctor. We may recall our former characteristics like motivation, enthusiasm or idealism, and we mourn their loss.
But Dr. Gilmartin suggests that, in reality, personality qualities like motivation, enthusiasm and idealism are already in our control all along. He also maintains that addressing hypervigilance is not so much about turning off what has happened to us, but turning on something different – specifically, those other parts of life that provide balance and perspective.
It’s also about being able to see how we can over-identify with a current role – which can significantly under-identify other existing life roles that provide this balance.
In police work, for example, he describes officers who, in response to the question “Who are you?” will reply:
“I am a cop.”
This, he suggests, is an example of over-identification with just one specific role – a response that often goes hand-in-hand with under-identification of other important roles. Consider the difference between that and a more balanced reply, such as:
“I work as a cop.”
Now consider as well how the question “Who are you?” can be asked of those living with heart disease or other chronic illness diagnoses. Would you answer such a query like this?
“I am a patient.”
Or like this?
“I am a mother/daughter/wife/sister/friend/colleague/tennis player/quilter/pasta maker/gardener/_____ (fill in the blank!) who happens to have been diagnosed with heart disease.”
When you answer with the first response, something pervasively dangerous can begin to happen. If you hate the role of being a patient and yet at the same time define yourself primarily in that role, this can perpetuate a self-destructive cycle of hypervigilance.
Dr. Gilmartin’s book chapter called How To Become an Emotional Survivor doesn’t simply advise “Don’t Worry, Be Happy” as an antidote to the survivor/victim dilemma. Instead, his following useful steps are equally applicable to those living with a chronic illness diagnosis:
- Practice aggressive time management: harness available time in your personal life to control activities, priorities and schedules that you do have complete control over
- Be proactive – not reactive: just as police officers spend an inordinate amount of time and energy driving around waiting for something bad to happen, patients who are hypervigilant may feel like they’re merely waiting for something bad to happen, too. Don’t get used to “going with the flow” by just waiting around.
- Schedule the time: maintaining a pre-planned written personal calendar that lists goals and choices is a basic survivor orientation. The victim looks forward to going camping with the family someday “when I’m feeling up to it”. The survivor looks forward to going camping two weekends from now. Even when you can’t control what’s happening with your health, you can control what’s taking place in your personal life by scheduling plans. These plans may have to be changed later on, but at least you are proactively making them.
- Make the time: victims think they can’t find the time to do what they like to do, while survivors make the time to do these things.
- Practice physical fitness: physical fitness is not a luxury, it’s a basic requirement to becoming an emotional survivor. Dr. Gilmartin explains that when he asks groups of exhausted and burned out law enforcement officers how they feel after they exercise, they inevitably respond: “Tired, but a lot better.” This is especially true among those expressing what Dr. Gilmartin calls the “I Usta” Syndrome: “I usta be fit. I usta go to the gym. I usta run every day.”
I identified with those police officers! My daughter Larissa (who lives two blocks away, and coincidentally first introduced me to Dr. Gilmartin’s book recently as part of her work as a probation officer) often calls to ask if I’d like to walk downtown to meet her after work so we can walk home together. I used to automatically think No, I’ll likely be too tired at that time of day . . . But she keeps asking. And one day, it struck me that I’m going to feel tired anyway – whether I spend a lovely hour catching up with my daughter or not. So I might as well say YES and feel “tired, but a lot better.”
Also on that last point, Dr. Gilmartin writes that many victims actively resist the concept of aggressively taking a sense of responsibility for and control of their day-to-day physical activity:
“A sustained physical fitness program will not be found in the day-to-day life of an individual who views the world as a victim and who doesn’t have proactive and disciplined time management.
But the individual who sets aside time four or five times a week to take responsibility for his/her physical fitness will also take responsibility for other personal life aspects that may have been previously been put on the back burner or abandoned.
“The very act of engaging in physical fitness means you’re taking control and responsibility for your time and actions each day.”
Finally, Dr. Gilmartin offers this piece of advice:
“Decide to survive.”
Survivors, he writes, place the central issues in their lives in their own control. They understand what they can control and what they can’t. They focus on doing their best, and then move on to more important things in life.
Survivors may appear to finish in last place, but that’s because they are usually running a different race.
(1) Kevin M. Gilmartin, PhD. Emotional Survival for Law Enforcement. E-S Press. 2002.
Q: How have you been able to change “obsessive anxiety about dying” into a healthier survivorship model?
Hypervigilance: waiting for that second heart attack
The “loss of self” in chronic illness is what really hurts
Looking for meaning in a meaningless diagnosis
How expecting recovery can help heart attack survivors
Where’s the “survivorship” model for heart patients?
Cardiac care for the whole patient – not just the heart
9 thoughts on “Are you a victim or a survivor?”
Living after a Heart Attack can be a total life changer … depending on the damage done to the heart
LikeLiked by 1 person
Good post! I don’t intend to over-generalization but I suspect that those who are “anxiety-prone” to begin with develop hypervigilance,in response to chronic conditions. People who are “depression-prone” tend to lean away from vigilance and rely on others (doctors et al.) to monitor & interpret symptoms.
I think the advice given is excellent for everyone – not just those with chronic conditions.
LikeLiked by 1 person
Interesting and thought-provoking theory, Judy-Judith. There are few things in life, in my experience, more anxiety-producing than having a heart attack – which is why hypervigilance is so common among those who survive. And I think you’re right – Dr. Gilmartin’s advice makes sense for all.
Carolyn, I really cannot begin to imagine how anxiety producing having a heart attack would be. I know that when I had my initial atrial fib episode I panicked (proof of panic: I drove myself to the ER terrified I was going to pass out while driving – duh!) and AFib pales in comparison to a heart attack.
I also wonder if the anxiety over heart related issues is heightened by those – like myself – who grew up during the time when the heart flat-lining, not the brain, was the determiner of death.
If you read the post called “Hypervigilance: Waiting For That Second Heart Attack” that preceded this one, you’ll see more on the grim statistics that show, overwhelmingly, your biggest risk of a heart attack is having already had one. Hence the hypervigilance…
LikeLiked by 1 person
Joanne Duncan-Carnesciali is a wellness coach who made me aware that I was doing the “I usta …” as in “I used to climb mountains”. She’s working on a Ph.D. so couldn’t work with me, but graciously and generously spoke to me on the phone for forty minutes.
After that conversation I had a different perspective on the walks I do. No longer thinking about getting to top speed, but thinking about overall fitness.
Like so many cardiac patients, I wish my doctors had suggested an exercise program that would have helped me. I bought a heart rate monitor and kept a diary of my heart rate at various spots along my route. I live in a hilly area and walked down and up the hill that
I live near the top of.
I now can walk a lot further than that.
LikeLiked by 1 person
I love that, Nitro Mama! Many walkers would walk farther to AVOID walking up a hill! In my old running group, our mantra whenever we were running uphill was “Hills are good for our bums!” Try it on your next walk, okay?
When I came home from hospital, I didn’t realise how weak I was, though as the days went by, I began to accept that I wasn’t who I thought I was. As so much of the heart attack occurred when I was either unconscious or out of my mind, I did not have memories of most of it. (I had complications)
What I could remember I wrote down, and as the days and weeks went by, my memory of the events faded. However, the thought that I was dying and in my mind, too young, was strong in my psyche. I felt my stomach turn every time I heard about a sudden death of someone who was younger than I was. Even now I still go through funeral notices to see how old they are.
Such thoughts though are not dominating, but they are there to a small degree. Do I feel like a victim? No, I feel lucky I have got more time, I have gone back to doing what I always do, and hoping that there isn’t another one waiting round the corner.
LikeLiked by 1 person
Good strategy Denise: “gone back to doing what I always do, hoping that there isn’t another one waiting round the corner” especially if you’re spending way more time in the “doing” and way less time in the “waiting around”!