by Carolyn Thomas ♥ @HeartSisters
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 thy 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)
Women are more likely than men to seek medical care when they think they need it, but 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, you may be at risk of not taking the illness seriously enough.
Are you:
- 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 30% off the list price when you order).
Heart Sisters 
This is wonderful information. I am going to be sure and copy this and give it to my cardiologist.
While having my heart cath done, I was told I had suffered a heart attack and nothing more was ever said about it. It was like it didn’t exist and neither did I. I have no family to talk to, and my friends don’t want to hear it because then they don’t have to deal with it.
I love the idea of a cardiac psychologist. Every hospital should have one. They sent me to cardiac rehab and all I do is 10 minutes on three different machines, two of which I have at home. There sure is a lot of work that needs to be done in educating our cardiologists about women and how we differ from men in this area.
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Hi Sandy – Our hospital does have one cardiac social worker, but most heart patients are sent home so quickly that many of us don’t get a chance to see her! In our area, there is also no home care nurse scheduled for a home visit post-discharge. We’re booted out the door of CCU as if we’d just survived minor bunion surgery rather than a life-altering cardiac event. But this reality isn’t reserved just for women – I suspect male patients suffer the same issues while surviving the crisis. Thanks for your comments – hope you’re doing much better now.
cheers,
C.
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I will say that they were in no hurry to get me out of there. I was in Coronary Intensive Care for 3 days and then CCU for another 3 days. The doctor actually wanted me to stay a few days, but without insurance I wanted to leave. Since my husband retired, I knew there would be someone home to help if I needed it. They did ask if I wanted someone to come in and I said no, again because of having no insurance. I really needed someone to talk to and still do. I don’t feel depressed, just sad, if that makes any sense.
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I had a big fight with my husband and we were nose to nose. It was an intense verbal match, both of us trying very hard not to go physical, which had happened in the past. I felt as though I was about to burst and then a pain in my heart. I had to back off and go into another room. Weeks went by and my face went grayish, I had little energy and my breathing was labored and loud when I lay down and slept.
I was putting the final touches on our Christmas and my birthday party prep when my husband looked at me and said he really thought we should go to the emergency room. I agreed, because I felt really terrible. They told me I needed open heart surgery and it would happen the next day. I had torn my mitral valve.
My heart was healthy, my tissues healthy, my veins clear and no other issues at all with my heart other than the tear. I turned 66 on the day of my surgery. I do not have heart disease. I tore tissue under extreme pressure. I do not take any heart meds now, 8 months later, but I have experienced extreme depression, and two months ago I tried to overdose on Vicodin.
I was hospitalized again, kept on suicide watch. It was total PTSD for me to be back in the same hospital with terrible withdrawal symptoms from the Vicodin I’d been on since the operation and even before as it was used to treat chronic pain from physical injury due to my sports activities. I have sailed long distance offshore with my husband for 40 years. Sometimes there were no doctors near or we were in foreign countries where I decided to just “get over” the totally torn rotator cuff, which could never be repaired because all of the ligaments were so atrophied. Or the fall down the five foot ladder that broke my fall on the last step by connecting with my lower back. So the vicodin. Legally prescribed for years.
My husband is a wonderful man and he tended me lovingly , caring and patient, anticipating every need.
Still the depression. It was to the point when I got home from this sudden surgery where I was telling him it was a mistake to be repaired, it was my “time” and I should have died. I was not at all prepared to be unable to move around for so long. I never even sit down! I was so shocked to be immobile, in pain and dependent.I couldn’t even process the profound concern I saw on the faces of my friends and family when they visited me.
I’ll be fine. I’ll get through this. I can’t believe how painful it was to just bend over to pull a weed the first time I tried it.
I feel ok after social workers steered me in the direction of a good therapist. I am now bipolar, don’t know if I was before but supposedly I am now. I refuse meds for that. My physical scar is the least of my worries. I just got rid of the clothing that is too low cut. I actually lost 30 pounds after the surgery as my throat was so messed up after the bypass equipment that I couldn’t eat for two weeks after the surgery. I lived on green tea, small bites of easily chewed up foods. It was nice we could afford my purchases of new clothes that are not low cut. A positive was now being 3 sizes smaller. I get mad when I find an old favorite v neck t shirt for instance, and then put it on and see the scar. So I put it in the Goodwill bag.
This has been a hard journey. No one can explain why my heart valve would have torn. There is no heart disease or congenital issue. I don’t smoke. I eat healthy, always have.
Now I don’t drink. For some reason it is really distasteful to me and I do not understand that at all. I have experienced the pounding heartbeat scare, as it comes upon me but since it never turns into anything I have learned to settle myself down until it returns to normal. Probably always had this pounding heart when I experience physical exertion. It’s just that now you really notice it. Because you still kind of worry. But I know I am fine.
My 6 month visit with the cardiologist was very good. He told me I should expect to live a normal lifespan and I am not on any meds, nor do I have any “spare” parts.
The scar is mostly mental. Maybe this is my personal life situation that has made it so. My husband has been wonderful and my PTSD is diminishing. I do go back to my version of normal which is: socially connected, physically active and securely married.
I am more than grateful to the talented surgeon who fixed my heart. I thanked my doctor for saving my life.
The scar sucks, sometimes it’s uncomfortable but I just try and ignore it. No big deal. It isn’t pretty but you don’t have to focus on it. My people love me and that is all that matters.
Don’t ever give up!
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Thanks for sharing your perspective here, Meridee. Thank goodness your social worker steered you toward that therapist. I think that talk therapy is hugely under-appreciated by many physicians who (not surprisingly) focus almost entirely on the specific organ involved and how THAT is healing – not all of the severe psychosocial symptoms that you experienced (depression, suicidal thoughts, overdose – these are very serious conditions that can also affect the body’s physical ability to heal. I’m glad you’re getting help for that.
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Carolyn, thank you for this blog! As I stated in an earlier post where I outlined my situation, I wish I had known others in my situation. I have sisters that I love and talk to almost daily, but no one really understands the things going through my head.
A co-worker suggested that I seriously look into some therapy and I am trying to do that now — more than 13 months after my surgery. But, I feel it is important to share my concerns with a professional. An added fear for me is that I still don’t feel great, and I don’t trust doctors these days due to their missing my symptoms before.
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Hello Jeannette – I’m so glad that you’re considering professional therapy. It can be hard to move past that break in trust once it’s happened with physicians before (sometimes more than once, for some people) but it’s important that we fight that impulse to simply give up and stop asking for the help we need and deserve. Best of luck to you…
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