The ink was barely dry on the book contract I’d signed with Johns Hopkins University Press on the morning I tuned in, as I like to do every weekend, to Michael Enright’s Sunday Edition show on CBC Radio.
Michael’s guest that morning couldn’t have been more appropriate, given the project I was just beginning. A physician-turned-author named Dr. Suzanne Koven was talking about people who write first-person accounts of their health crises, books that Michael indelicately referred to as “sick lit“.(1) . Illness, Michael began, is always more interesting to the ill person than to the reader. But Dr. Koven quickly interjected.
It’s possible, she insisted, to “write about your own experience of illness in a way that’s not only informative about the illness for a general audience, but in a way that speaks to broader human questions.” The illness narrative, she added, isn’t just about illness, “but can also be about big themes like identity and life and death and love and resilience.”
Then Michael suggested that the most popular illness narratives surely must come from those living with cancer or with an addiction to drugs or alcohol:
“You need high stakes to make a good story, don’t you?”
Cancer and addiction certainly provide those stakes, he added, because we associate both with the ultimate threat to life.
But Dr. Koven interjected again, this time wondering aloud why heart disease has not been a more prominent book theme for survivors to address, especially when you consider what she called “the metaphorical resonance of the heart,” and the fact that heart disease is one of our most deadly health threats, killing more women every year than all forms of cancer combined. She asked Michael:
“Why aren’t we seeing more books written by heart patients?”
I asked that same question myself eight years earlier as a freshly diagnosed heart attack survivor. I wasn’t looking for books about cardiac risk factors or heart-healthy recipes or bad cholesterol. What I desperately wanted to find were those written for and by women like me.
A Woman’s Guide to Living with Heart Disease is the book I couldn’t find back then when I really needed it.
I’m not a physician. I’m not a scientist (although I spent two decades living with one – does that count at all?) As I often describe myself, I’m just a dull-witted heart attack survivor. But I’m also a woman who, like far too many others, had her heart attack misdiagnosed. There’s nothing quite like a misdiagnosis to heighten the high stakes required to make a “good story”. See also: Same heart attack, same misdiagnosis – but one big difference
After graduating from the Mayo Clinic heart patient advocacy program called the WomenHeart Science & Leadership training in 2008, I taught myself how to figure out cardiac research papers published in medical journals. And then I translated those studies into plain English for my Heart Sisters blog readers. In 2014, the British Medical Journal (BMJ) invited me to join their team of patient reviewers for cardiology papers submitted to the journal for publication. And when the Vancouver Coastal Health Research Foundation invited me to speak at a public forum on women’s heart disease, they later described me as a “knowledge translator.” I love that job description!
I have learned that, as Dr. Suzanne Koven assured Michael Enright’s radio audience, in my story and in the stories I share about other women (no matter what their cardiac diagnoses), readers appear eager to see – and are in fact responding to – what she calls those “big themes.” They are indeed as important to us as the diagnosis itself.
None of us can ever truly prepare for how a catastrophic medical crisis can change our lives and those of our loved ones. While navigating our way, we could use an experienced, trustworthy friend alongside who’s traveled the same road before us.
My hope is that, in reading this book, you will find that companion.
 S. Koven, “Taking the Temperature of Sick Lit,” interview with M. Enright, CBC Radio Sunday Edition, March 6, 2016.
This post was originally published as the preface to my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, 2017). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon. Or if you order it directly from my publisher, Johns Hopkins University Press (use the code HTWN), you will save 30% off the list price.
Dr. Suzanne Koven is a primary care physician and Writer-in-Residence in the division of general internal medicine at Massachusetts General Hospital in Boston. This is her website.
“Best narrative I have ever encountered on this topic” (an overview of my book from the Cardiac Health Foundation)
Living with both fibromyalgia and heart disease (Dr. Barbara Keddy’s essay on her own experience, and a lovely review)
Can’t wait to read my book? Here’s Chapter 1
Dr. Martha Gulati, Chief of Cardiology at the University of Arizona, wrote the world’s best foreword for my book
“I am lying in a surprisingly bright glass-walled room…” (Here’s how Chapter 4 starts)