Why we keep telling – and re-telling – our heart attack stories

by Carolyn Thomas    ♥   @HeartSisters

A woman in the grocery store calls out from the neighbouring checkout line: “Hey! You’re the heart lady, right?” She continues, in what seems a much-too-loud voice, that she had been in the audience at one of my annual Cardiac Café presentations at the university. But “heart lady?” Is this really how I want to be known and recognized for the rest of my natural life?  

Five months after I survived a misdiagnosed “widow maker” heart attack in 2008, I went to the world-famous Mayo Clinic to attend the annual WomenHeart Science & Leadership patient activism training for female heart patients.  Since that fateful week, I have spoken to thousands of people – the general public, health care professionals, heart patients and their families, from living rooms to conference ballrooms – about the important topic of women and heart disease, our #1 killer. And as the first Canadian accepted to attend this training program at Mayo, I was apparently the only game in town after I came back to the west coast when it came to heart attack survivors sharing what they’d just learned at the Mayo Women’s Heart Clinic.

Yet over the years, and countless presentations, has my heart attack survival tale typecast me in the eyes of many (like that woman in the next checkout line)? To her, I’m the “heart lady” who keeps telling and re-telling that same old story. A professional heart attack victim.

But wait. . .

Aren’t I also a mother, a daughter, a sister, a friend, a neighbour, a writer, a reader, a speaker, an artist, a gardener, a baker of focaccia bread, a rider of bikes – and so much more than just a woman who happens to be also living with heart disease?

After that grocery story incident, I began to seriously re-think how both my public speaking and this very post you’re now reading may actually be reinforcing my limited “heart lady” status – not just for others, but more importantly, for myself.

Frankly, I’d already been mulling over very wise comments from people like Nova Scotia’s Dr. Barbara Keddy, author of Women and Fibromyalgia: Living With An Invisible Dis-ease, a fascinating book that I somehow believe has nothing yet everything to do with the subject of women and heart disease, too.

She cites, for example, a support group of Toronto women living with fibromyalgia who get together regularly – not to discuss their shared illness, but wellness only. Dr. Keddy explains:

“    Reliving past injuries of a physical or emotional nature only reactivates the nervous system. Instead, it is more important to recognize our reactions rather than the specific events related to the trauma. Perhaps this is why ‘talk therapy’ has not been helpful for people with fibromyalgia.”

I was thunderstruck when I first read Dr. Keddy’s words.

Isn’t “reliving past injuries” what I’m doing every time I stand up in front of yet another new audience and start off my presentation about women and heart disease by re-telling my own heart attack story?

How I long to be exactly like my regular old pre-heart attack same self once again!

But anyone who survives a traumatic experience like a heart attack will never really be the same again, according to psychologist Dr. Al Siebert, author of The Survivor Personality: Why Some People Are Stronger, Smarter, and More Skillful at Handling Life’s Difficulties.

Some people remain emotionally wounded for life after a medical crisis, he explains. They relive and re-experience distressing and frightening moments again and again. Others recover fairly well over time, often with the help of an accommodating family and friends or appropriate professional help.

Some, however, do more than simply recover, says Dr. Siebert:

“They heal and grow, and become even better than they were before. They become transformed.”

Every transformational journey is unique, but Dr. Siebert explains that survivors in this third group have two things in common.

1. They integrate the traumatic experience into their identity and make the experience a defining part of their life story.
2. They talk or write about the trauma in a way that is helpful to others.

When I read these words, I knew instantly that both statements rang true for me, although calling myself “better than before” would still be quite a stretch. My own cardiac event, just as for all heart attack survivors, had certainly become a “defining part of my life story”. How can it not?

But I could both “talk and write” about this trauma in a way that I’ve been told seems to be indeed helpful to others in the unique way that listening to somebody who has walked the talk can be. My former colleagues in public relations tease me that this is what happens when P.R. folks have a heart attack: we just keep on speaking and writing and looking stuff up – because that’s all we know how to do!

For the women in my heart health presentation audiences, my brief introduction to my own heart attack story turns out to be a surprisingly entertaining cautionary tale of what never to do after a man with the letters M.D. after his name sends you home from the E.R. in mid-heart attack with an acid reflux misdiagnosis.   

I met a woman recently who told me she has attended my free 90-minute “Heart-Smart Women”  presentations four times already over the years. I figured that she must be a slow learner. Or a stalker.

As Dr. Siebert says, I have learned how “to talk about these experiences as an observer and learner, to confess mistakes, bad judgment, weaknesses, and laugh at myself!” My presentations, oddly enough, are consistently – and amazingly – greeted with gales of laughter – for both me and my audience members. One reviewer in fact described my talks as “part cardiology bootcamp and part stand-up comedy!”

According to Dr. Siebert, the transformational process that leads from recovering from a deeply traumatic experience to becoming a resource for others can generally tend to follow a complex sequence of predictable phases, including:

1.  Free Fall Phase:  reliving fears and memories

• You wonder:  “Why me?” You fake being “normal.” You’re easily upset by certain statements made by others. You feel isolated or lonely. You may attempt to suppress your feelings. You may also decide to talk about your traumatic experiences with a therapist or a support group of people who have been through similar experiences.You may have nightmares. You find yourself reliving the experience. You wish this had never happened to you.

2.  Taking Control Phase:  wrestling for control of your spirit

• You repeat, relive, and talk about the experience again and again with good listeners. You discover that after a while, you can tell a shorter version, a summary, with less emotional charge. You may feel moments of relief, may sleep and feel better. You can actually feel joyous about what you learn about yourself and are accomplishing.

3.  Transition Phase: awkward efforts in unfamiliar territory

• You regress or slide back. You accept that you are human, forgive yourself, and start over again. You experiment telling your story to others outside your circle of closest friends and family. You discover that people either cannot handle listening for more than a short time or become overly sympathetic about what you went through. Both kinds of listeners have to be coped with, are dissatisfying to talk to. You struggle with assimilating your traumatic experience into your identity. How do you deal with people labeling you by this one experience?

4.  Re-emerging Phase: publicly declare and validate your new identity

• You now control your experience, it no longer controls you. You can stop thinking about the experience when you want to. You gradually develop the ability to choose to.  You have an ability to see through people who are trying to fake being “normal”–and you let them do that. You make yourself available to others who are just starting to deal with similar traumatic experiences. You are able to listen to them without falling back into your own old pain. You encourage and coach them without trying to rescue them. You can talk about what you learned in a way that’s useful to them:
  1. not talk about your experience even when asked,
  2. give a short Reader’s Digest summary,
     
  3. talk in detail with the rare person who is sincerely interested, is a good listener, and will take time to listen.  See also:  Choose Your Listeners Carefully
     
• You may discover that you have valuable messages and that you have acquired important learnings in this school of life that you want to share with others. You appreciate that you have somehow managed to convert misfortune into good luck.
• You find your voice. You talk to others about your experience and what you learned. You may write an article. You may think of writing a book. You want others to know that life might be different now, but it’s not over.
  
• You work at making your story of your experience and your healing journey a small part of your larger identity. You avoid letting your experience become your primary identity in your own mind, even though it may be how others generally refer to you. You recognize and connect with others who have been through their own transformative journey. You appreciate and validate each other’s spirit.
• You discover at times that you’ve gone days without even thinking of the traumatic experience or your long healing journey.

This post was also featured on Better Health’s Grand Rounds.

♥

NOTE FROM CAROLYN:   I wrote much more about the subject of recovery and recuperation in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press). 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).

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See also:

We Survive It – But Do We Ever Really Recover From a Heart Attack?

Could “Goodism” and Self-sacrifice Be Linked to Women’s Heart Disease? (more on Dr. Barbara Keddy)

What I Learned At Mayo Clinic Was Shocking (from the Sharing Mayo Clinic website)