How I wish I’d discovered Dr. Wayne Sotile’s wonderful book Thriving With Heart Disease while I was still a patient in our hospital’s Coronary Care Unit following my heart attack.
A large hint: if you or somebody you care about ever experiences a cardiac event, get your hands on a copy of this book before discharge from hospital.
The book’s second chapter is called The Four Stages of Heart Illness. Dr. Sotile, a cardiac psychologist, describes the heart patient’s journey through a series of four “separate, identifiable stages”.
These stages don’t always proceed neatly in sequences, but Dr. Sotile believes that your recovery will have fewer surprises if you are familiar with them and know what to expect.
Over the next few weeks, I’ll be exploring each of these four stages along the cardiac journey.
Stage 1: Surviving The Crisis: Illness strikes, and patient and family begin the journey.
According to Dr. Sotile, each heart patient gets the news of a cardiac diagnosis in a different way: one may be sitting in her doctor’s office, stunned by frightening test results; another may land in the Emergency Room in mid-heart attack.
But however the cardiac diagnosis bomb hits, it hurls you into strange, forbidding territory and your journey begins.
If you’re the patient, this ‘wait and see’ period feels as if your future has been torn from your hands, and has become the property of medical professionals. Feelings of helplessness can overwhelm you. You may no longer trust your suddenly unreliable body. Family members also feel helpless as they stand by, waiting for information, hunched with worry. See also: Cognitive Dread: the Painful Uncertainty of Waiting
Thriving with heart disease involves both muscle and mind. But all too often, the psychological aspect of healing may be overlooked. There are even some cardiologists who dismiss the notion that mending the mind can help heal the heart. This is why you must see yourself as as your physicians’ partner – not their child.
In the words of Dr. Melvin Belsky, M.D.:
“It’s not enough for the doctor to stop playing God – you’ve got to get off your knees!”
The big story here is not only that assertive patients and family members get better care from physicians, but that heart patients must be assertive to get the care they need. Let people know how you would prefer to be treated. For example, if it irks you to address physicians half your age as “Doctor” while they assume they may call you by your first name, just tell them how you’d like to be addressed.
No matter how well you and your doctors get along, however, you’ll still have emotions to deal with. Immediately after learning the diagnosis, patients and their families may struggle with bouts of guilt and anxiety, pervading conversations and thoughts.
Family tensions may mount during this early stage. For many, this stage means coping with just being inside a hospital. This can be physically and emotionally draining, not only for patients but particularly for family members.
Monitors beep, screens flash, tubes emerge from and disappear into the body. Coolly competent doctors and nurses take charge. If surgery is required, there is the horror of seeing the patient attached to a respirator. She may be sedated, cannot speak, and may float in and out of awareness. For loved ones clustered nearby, the image of the person they love lying pale and helpless may haunt them for the rest of their days.
While many patients have similar experiences in hospital, their responses may of course vary widely.
Denial is a psychological defense that allows many patients to avoid dealing with the fact that they have heart disease. In fact, patients showing high early levels of denial actually have been shown to be less anxious, less depressed and leave the hospital sooner because they have fewer medical complications. However, over time, denial can be dangerous because deniers are less likely to follow doctors’ orders. (See also: Denial and its Deadly Role in Surviving a Heart Attack)
So deniers take note: your successful recovery and longterm adjustment requires that you accept that you have heart disease, and then cope with the feelings that come with it.
For most patients, this adjustment comes naturally.
Most heart patients start experiencing anxiety and depression after several days, which signals that denial is diminishing. While these emotions may be painful, they typically decrease with time. If they don’t, get help in learning to manage both anxiety and depression through counselling, medications, or a combination of both. (See also: Depressing News About Depression and Heart Disease and 10 Non-Drug Ways to Treat Depression in Heart Patients)
For female heart patients especially, denial that heart illness is a menace may be a lethal problem. Dr. Sotile recommends these two excellent books:
- The Women’s Heart Book – by Dr. Fredric Pashkow and Charlotte Libov
- Women Are Not Small Men – by Dr. Nieca Goldberg
Both books call attention to the reality that, while women are more likely than men to seek medical care when they think they need it, they seldom think they need it when it comes to their hearts. The Journal of Social Issues also reported on this disturbing trend (“The Politics of Women’s Health”, April 1994).
Dr. Sotile warns that if you have known for more than one month that you have heart problems and are experiencing any of the following symptoms, you may be at risk of not taking the illness seriously enough.
- clinging to the belief that the illness isn’t serious when medical evidence suggests that it is?
- choosing to interpret symptoms of heart disease as those of minor physical ailments (for example, insisting that the pain in your chest is “just gas”?)
- refusing to believe that you’re sick in the first place?
- denying that you need to be admitted to the hospital and resisting attempts by others to get you there?
- denying that the illness is going to affect your life or the lives of the people you care about?
If these sound familiar, you can start helping yourself by doing two things:
- 1. Identify what you are feeling
- 2. Tell someone about how you’re feeling
♥ Excerpt from the book Thriving With Heart Disease © 2003 Wayne M. Sotile, PhD
Here is how Dr. Sotile describes the progress of the other three stages of heart illness:
- Stage 1: Surviving The Crisis – Illness strikes and patient and family begin the journey.
- Stage 2: Creating a Coping Strategy – Everyone starts to grasp what heart illness is, what’s involved in treatment and recovery, and that the patient and family must work as a team.
- Stage 3: Handling the Homecoming Blues – You’re suddenly on your own; reality sets in and the team must adapt to its new normal.
- Stage 4: Learning to Live with Heart Disease – Patient and family have accepted the diagnosis and committed themselves to living with the illness, not in spite of it.
Find out more about the book Thriving With Heart Disease and about Dr. Wayne Sotile’s work.
NOTE FROM CAROLYN: I wrote much more about what it can be like immediately during and after a cardiac event in my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price when you order).