When an illness narrative isn’t just about illness

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters 

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.

♥

[1] S. Koven, “Taking the Temperature of Sick Lit,” interview with M. Enright, CBC Radio Sunday Edition, March 6, 2016.

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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.

See also:

Book reviews

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.

“Very different from other heart books”: my Q&A with Johns Hopkins University Press

“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)

A Woman’s Guide to Living With Heart Disease: my blog-turned-book project!

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)

Published by Carolyn Thomas

18 thoughts on “When an illness narrative isn’t just about illness”

  1. Pingback: Rebecca J. Hogue

  2. I agree with Dr. Koven – a well written illness narrative is about life, a significant change in life often, the *real* things that matter in life, can be so helpful especially to newly diagnosed people. We feel less alone. I have just ordered your book, thank you so much for writing it.

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  3. I can’t begin to count the number of times in the past couple of years that I’ve gone to a women’s meeting of some kind and heard some speaker encouraging her audience to share their story. Not always about heart disease but just in general. Now 61, I’m feeling a strong pull to do just that, especially with my children, who are 32, almost 30, and 20.

    In March of this year I was invited to share at a women’s brunch at a friend’s church (she’s the pastor’s wife) where most of the women in attendance would be over 50. I love public speaking so I was glad to accept. I knew right away that my talk would be about women’s hearts and I felt God gave me a title: “A Woman’s Heart: Broken, Bitter, Beautiful.” I mixed practical information about heart disease with parallels of “the metaphorical resonance of the heart,” as it was put here. For instance, in discussing broken hearts (emotionally, which we have all experienced at one time or another), I shared about broken heart syndrome, which I have learned about in my journey of heart disease. I talked about how having a broken heart often leads to becoming a bitter person. I’ve seen this happen in the lives of several women I have known, such as my grandmother and my mother-in-law, who have become bitter old women over a lifetime that didn’t always turn out the way they had planned. I also used Naomi in the book of Ruth as an example as well. I also find myself feeling the pull to bitterness more and more as I get older, and I so don’t want to end up that way. I likened this bitterness and hardening of the emotional heart to atherosclerosis, so-called hardening of the arteries, and shared my story of having 2 stents installed and avoiding heart attacks both times.

    There are so many parallels that can be drawn between heart disease and those resonating metaphors! I think I barely scratched the surface, and of course I have a lot more to learn about heart disease too.

    I ended by sharing the story of a friend who is a heart attack survivor who had told me that the damaged, basically dead place in her heart seemed to have been getting larger and her cardiologist was issuing tests to find out why. That struck me so powerfully. Emotionally, it seems to me that we are all walking around with dead places in our hearts as a result of broken hearts and things that just didn’t work out the way we wanted to — broken dreams, broken relationships, etc. But I ended by sharing the good news — that Jesus conquered death on the Cross and that there is resurrection life and He came to heal and “bind up” the broken heart, and to wipe every tear from our eyes and to bring us to the place where our joy will be made full. My talk was very well received.

    I’ve been mulling over in my mind since March what I would write if I could expand this topic into a book. I know a faith-based book might not appeal to everyone, but I’ve been a Christian for 46 years and it’s just the way I see the world.

    Carolyn, thank you for a reminder and an encouragement to pursue this project! I’ve already thought that if I write it and if it gets to publication, I’m going to ask you to review it!

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    1. Meghan, I can tell you right now that when you do write your faith-based book, I would be very happy to review it (as long as you don’t mind a non-Christian reviewer!) There are SO MANY women’s heart stories, each of them unique. Each story may not resonate with all readers, but I can tell you from personal experience that each story WILL resonate with those who are looking for exactly that book. As Nancy pointed out (below) there are very few heart books written by patients (compared to the many written by cancer patients). Take that speech you did and use that as the starting point for creating a 10-chapter draft table of contents. Once you do that, the writing will fall into place. Best of luck to you…

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      1. Thanks Carolyn! I’m going to start on this today! I appreciate your willingness to review and will let you know when I need that (haha — your book took 2 years, right? — so this could take years too!).

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        1. Yes, my book took almost exactly two years between the time Johns Hopkins University Press first contacted me out of the blue and the day that the actual books arrived in a box at my door! So the sooner you get started, the sooner the project will be finished!

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  4. Hi Carolyn,
    You are so right. Illness narratives aren’t just about one person’s illness experience or even one illness. Most are about those big life themes – the themes that unite us all in our humanity. As you know, those bigger themes are what I was attempting to cover in my memoir too.

    Specific to heart disease, your book is so important because there does seem to be a shortage of narratives about heart disease. There do seem to be more in Cancer Land. I wonder if there is some sort of misguided, inaccurate hierarchy at play here. I love how your book intertwines your personal experience with accurate, important information about heart disease, especially how it pertains to women.

    I just know that those who read your book are indeed finding that companion, Carolyn. Thanks for another thought-provoking read.

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    1. Thank you Nancy for your very kind words. You’re so right – there are many many books written about cancer out there – both by patients and by healthcare professionals. As Michael Enright asked Dr. Koven in his radio interview: “You need high stakes to make a good story, don’t you?” Cancer provides those stakes, he insisted, because we “associate it with the ultimate threat to life”.

      Nobody would ever say that cancer isn’t a truly horrible, frightening diagnosis. But because cancer (especially breast cancer which has its own shopping-related pinkification) has such a high public profile compared to heart disease, we continue to (mistakenly) associate it with that “ultimate threat to life”, despite the fact that heart disease does kill more women than all forms of cancer combined each year.

      NOTE TO READERS: Nancy blogs at Nancy’s Point and is also the author of a number of books about breast cancer including (best title ever!) “Cancer Was Not a Gift, and It Didn’t Make Me a Better Person” – a must-read for any woman who is weary of stories portraying cancer as merely a chance for personal enlightenment.

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  6. Pingback: Rebecca J. Hogue

  7. Dear Carolyn:
    Once more a Sunday morning reading your wonderful blogs. I don’t know what I (and many, many others) would do without you.

    I suffer from thinking of myself as a frail, old woman, approaching 80 who has been short changed because I had a heart attack at 73. Haven’t I suffered enough with fibromyalgia most of my life? I constantly asked myself and often still do.

    On the other hand I am so privileged. I am in a country with universal health care (although there are problems within it, of course, but overall a great blessing); I have a healthy, caring spouse; good friends; lovely home; great kids and grands; good income.

    Yet, since my hip replacement my walking has been compromised and I don’t have good mobility, unlike both my parents who were playing golf into their 80s. Not fair, I often complain.
    I recently self published a wee book “The Lamp was Heavy”, an oral history account about student nurses in the 1950s. Now almost all the 500 copies are sold, by the way(!), and the proceeds are going to the Sara Corning Society where a statue is being built in her home town to honour her life as a great humanitarian.

    Reading about her life, listening to the voices of the wonderful older (old) women whom I interviewed for the book, and reading your viewers’ comments all these years has often shamed me for all the whining I do.

    As the saying goes I should ‘suck it up’ and instead of considering myself a victim I must work on thinking of myself as a survivor! I’m still here, with various pieces missing and while many others are in worse shape, I have survived the heart attack, living with fibro and able to make a small contribution to society. How lucky I am. I need a jolt like this blog of today. Thank you once again!

    As an added note I was happy to see the statue of Sir John A. MacDonald torn down in your lovely city of Victoria as more and more statues of women are being slowly erected. We are the heroines whose lives have been sorely neglected. It is women like you who are our champions, not the old white men of yesteryear!
    Love,
    Barbara

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    1. Good morning Barbara and thanks for your kind words. Congratulations on the success of your new book. I’m sure all nurses who trained in the 50s will love revisiting this unique history. * READERS: Dr. Keddy’s first book is “Women & Fibromyalgia: Living With an Invisible Dis-Ease“.

      As I was reading your comment, it struck me that both of the seemingly at-odds stories are equally true (e.g. 1: you live in Canada, with a comfortable family and socioeconomic life, etc.) and 2. you do have a long history of very serious health issues. Both of those truths exist – but #1 does not negate what #2 has meant to your quality of life so far. As I heard from a woman who was one of the finalists in the World Championship of Public Speaking last weekend: “It is what it is – and it ain’t what it ain’t!”

      PS. I shall forthwith suggest to our Victoria mayor that she consider erecting a statue of ME now that old Sir John A. has departed to a storage locker someplace! 😉

      Like you, I do not understand the public reaction against this statue being removed. In his day, he was a racist drunk, forced to resign from office over the Pacific Scandal (taking cash bribes from businessmen seeking the contract to build the Canadian Pacific Railway), famous for ordering the execution of Métis leader Louis Riel, and worse, he caused immense suffering for generations of First Nations people as a direct result of his policies. I know, I know – he was just “a product of his time” as his apologists claim, but these statues were erected based entirely on male-dictated attitudes and actions of the 1800s that no longer deserve to be honoured like this. Harrrrumph!!

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  8. Pingback: Journeying Beyond Breast Cancer

  9. Ooh my favorite topic as you know, Carolyn … you had me at narrative. I’ve been quite a fan of Dr Koven’s writings on this topic for many years, but not quite as big a fan as I am of your writing 😉

    We must keep telling our stories, particularly those stories from the margins of health. That’s why I am so grateful for blogging and the ability to tell a more nuanced story than the stories we hear most often.

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  10. My journey started February 2015. I’ve had two heart attacks, two strokes, and just been diagnosed with diabetes. Everything I have done in my adult life has been to avoid these effects. I quit smoking 18 years ago, 20 years ago became a vegan, and on the day of my first heart attack, I just ran 7 miles. I am told all this comes from genetics.

    I finally have a new cardiologist that said to me stop acting like a victim and become the Survivor that you are. Amen

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    1. Hi LuAnn – Thanks so much for sharing your perspective. Yours is a good example of how understandable it would be to remain frozen in “Why me?” and the general unfairness of it all. (See also: “There’s No Fair Fairy in Life“).

      It has taken time to arrive at this point because you were finally ready to do so. Best of luck to you…

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