For more than 30 years, Dr. Wayne Sotile was the director of psychological services for Wake Forest University’s Cardiac Rehabilitation program. Which is to say that he’s spent a lot of time talking and listening to heart patients and their families. In 2008, while recuperating from my own heart attack, I discovered his must-read book called Thriving With Heart Disease.* That title, by the way, has always bugged my Alaskan friend Dr. Stephen Parker (a cardiac psychologist and himself a heart attack survivor) who once made this comment about the book’s title:
“Just as soon as I can gather myself together, I am planning on writing a book called ‘Thriving After I Lost All My Body Parts’…”
Despite that small quibble about the title, Dr. Sotile is a terrific writer who really nails it when it comes to guiding those who are freshly-diagnosed with a chronic and progressive condition like heart disease. Another of his many books expands that guidance. It recognizes that it’s often the patient’s entire family who need help coping with the stresses and changes brought on by a cardiac diagnosis. Such help, he claims, can actually be the key to recovering.
This other book, published in 1992, is called Heart Illness and Intimacy: How Caring Relationships Aid Recovery. As Dr. Sotile correctly reminds us, the patient may not be the only one profoundly affected by this diagnosis. Coping with a heart illness also involves spouses and other immediate family members dealing with an endless volley of stressors while trying to figure out how to resume a semblance of normal day-to-day life.
There is, in fact, no neutral position regarding the family’s impact on the recovering heart patient, warns Dr. Sotile: family reactions either help or hinder the patient’s recovery.
This reality was also illustrated in a moving essay written by a cardiac spouse named Steve Kirsche after his wife Martha was diagnosed with cardiomyopathy:
“I admit I still expect her to be the same, as universally people still tell her she looks so good and us guys are very slow to pick up on change. Her medications are affecting her emotionally, and I found myself mad at her for things she never would have said before. It was a huge strain on our storybook romance.
“I am learning to NOT react instantaneously when she appears to say something that would get me upset. Shame on me for not picking this up sooner. It’s amazing this woman is functioning at all!! It’s not easy, and I don’t usually succeed, but I will get better and I will try to be more sympathetic.”
Although patients like Martha understandably need the most concern, they are also the ones in the family receiving the most targeted attention and medical help, especially during early days and weeks – all while their ignored family members might find themselves still reeling emotionally. Dr. Sotile explains:
“It’s important to remember that the family members of this patient – especially the spouse – are also faced with stressors.
“But family members are not typically identified as ‘patients’ in this process; they aren’t viewed as needing the special care or attention that come with being sick. They’re left to manage overwhelming stress without the nurturing insistence from others to ‘Take good care of yourself!'”
Some families may engage in what Dr. Sotile calls “illness behaviour”, living a life focused on the patient’s illness rather than on wellness. It’s what some scientists describe as the Velcro/Teflon phenomenon.(1) For example, neurologist Dr. Ashok Panagariya cites studies that suggest:
“The brain is like Velcro for negative experiences, while Teflon for positive emotions. Thus, bad memories tend to stick and good memories are easily forgotten.”
Or as one heart patient’s spouse told Dr. Sotile:
“After my wife’s heart attack, we all got used to walking on eggshells in dealing with her. She was afraid she wouldn’t recover, and we didn’t really know what to do to help her. We all changed our lives in umpteen ways out of fear of her ‘weak heart’. We basically stopped doing anything but work, worry, and wait for the next heart attack.”
If this description sounds familiar to you, Dr. Sotile’s basic summary of how families function might help:
- there are no perfect families
- families tend to work as teams
- family teams resist change
- family structures determine how we relate to one another
I also like his explanation of how healthy families progress through three commonly observed stages of reaction while adjusting to the serious illness of a loved one:
1. Initial Stage: Let’s Get Together and Endure (concern and caring for one another at first, shock, feeling numb, wanting ‘proof’ that patient will recover, guilt, overwhelming fatigue, anger, taking out frustrations on medical staff, desperately wishing this had never happened)
2. Intermediate Stage: Developing a Game Plan (shock subsides, coping becomes task-oriented, denial, confusion, learning more about diagnosis and treatment, differences in interpreting medical advice, dealing with grief, feeling powerless, trying to hide emotions to protect the patient, monitoring patient’s behaviour like a stern parent, pre-occupied with future fears, homecoming depression especially in the first six weeks post-hospital discharge)
3. Long-range Adjustment: Coping Together (restoring order to family operations, spouses resuming physical intimacy, growing sense of teamwork, flexibly adjusting family roles and rules, allowing and talking about honest reactions, seeking accurate information, setting clear goals, coming to peace with oneself and others in the family)
The take-home advice here: the way any family copes with serious illness is constantly evolving.
Heart disease is a chronic and progressive disease that lasts a lifetime. It’s the gift that just keeps on giving, so coping strategies that may have worked within a family in the early weeks and months may not be so effective later on.
And our families don’t always get this adjustment “right”. Instead, each of us must forever re-adjust, modify, and reevaluate our own coping strategies.
The families that Dr. Sotile says he’s especially concerned about are those he describes as not showing any obvious early signs of stress in reacting to the patient’s illness, those who settle into “a subtle and dangerous shift” in their ways of living as a family. Such family members may appear to be doing a lot better than they actually are, or may fail to notice distress signals being sent out – signs that are often clearly obvious to observers outside the family.
This “I’m-fine-just-fine” phenomenon may be a sign of what behavioural psychologists know as “defensive functioning”, an unconscious internal attempt to protect ourselves from powerful, identity-threatening feelings of anxiety (for example, feeling bad about a current health crisis). Experts tell us that all adults have and use these primitive defenses, but most also have ways of coping with reality. See also: Post-Traumatic Growth: how a crisis makes life better – or NOT
Do yourself a big favour. If you’re a heart patient, a spouse or the family member of a heart patient, find yourself a copy of Dr. Sotile’s book, Heart Illness and Intimacy.
He wrote it almost 25 years ago, but his message and important advice are as valuable now as ever for both heart patients and those who care about them.
Read it, share it, and – most importantly – talk about it.
(1) Epel ES, Blackburn EH, Lin J, Dhabhar FS, Adler NE, Morrow JD, et al. Accelerated telomere shortening in response to life stress. Proc Natl Acad Sci
NOTE FROM CAROLYN: I wrote lots more about family and caregiver responses to heart disease in my book “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, November 2017)
Q: How did the responses from your family help your own recovery since your own cardiac event?
- Surviving the crisis: the first stage of heart attack recovery*
- Creating a coping strategy: the second stage of heart attack recovery*
- Handling the homecoming blues: the third stage of heart attack recovery*
- Learning to live with heart disease: the fourth stage of heart attack recovery*
- A wife’s heart disease teaches her husband a big lesson
- Which one’s right? Eight ways that patients and families can view heart disease
- When the ‘wrong’ family member gets heart disease
- After your heart attack: what now?
- When you live with a serious illness – and a bad marriage
- Who will take care of you at home if you’re seriously ill?
- How to cope when your hubby is the heart patient