What a year it’s been since my book was published by Johns Hopkins University Press one year ago this month! When it was launched, “A Woman’s Guide to Living with Heart Disease” became Amazon’s #1 New Release in the Medicine/Public Health category. The book is already into its second printing, and reviews have been truly wonderful (with one notable exception: an Australian reader named Robert who complained in his Goodreads review that there was “a bit too much emphasis on how women are neglected when it comes to heart disease” – and then added: “Happily for me, my doctors, nurses and physios did everything by the book.” Thank you Robert, for helping to illustrate the cardiology gender gap so perfectly!
To celebrate this one-year milestone (and entice you to buy the book for yourself, or as a really useful gift for a freshly-diagnosed woman you care about), here are some random excerpts from my book, gathered from each of the 10 chapters.
Chapter 1: “The First Signs”
♥ “Because I was clueless about women’s heart attacks, it was easier to believe that Emergency physician who had sent me home with an acid reflux misdiagnosis.”
♥ “Many women do not describe their chest pain heart attack symptoms as ‘pain’ at all, instead using words like pressure, aching, burning, heaviness, fullness or tightness. Some will even argue with Emergency personnel who write ‘chest pain’ on their charts…”
♥ Dr. Jean McSweeney: “95% of the women we interviewed for our study suspected something was very wrong in the weeks or months leading up to their heart attacks.”
Chapter 2: “Deadly Delay”
♥ “The worst chest pain episodes felt like a cross between a Mack truck parked on my chest and a fiery roaring burn right up into my throat. But at no time did I consider calling over the flight attendant to ask for help.”
♥ “Studies on why women wait so long before seeking emergency help during a heart attack suggest that our priority lists are surprising (in an amusing-yet-pathetic way) and help to explain why, even in the middle of deadly heart attack symptoms, women will delay getting help if something more important comes up. More important? What could possibly be more important than having a heart attack?”
♥ “If you ever find yourself experiencing frightening cardiac symptoms, ask yourself what you’d do if these same symptoms were happening to your mother, your daughter, your sister or any other woman you care about. Chances are you’d insist on seeking immediate help for them.”
Chapter 3 – Finally, A Correct Diagnosis
♥ “Even the name of the type of heart attack I survived (the so-called widow maker) tells you a lot. Doctors don’t, for example, call it the widowermaker…”
♥ “If you’re a woman who exhibits signs of anxiety, your heart attack symptoms are far more likely to be misinterpreted compared to those of men presenting with the same symptoms. But unless you arrive at Emergency unconscious, my guess is that most of you would look and sound highly anxious while in the throes of a cardiac event.”
♥ Mayo Clinic cardiologist Dr. Sharonne Hayes: “For decades, most cardiology research has been done on (white, middle-aged) males. So if women’s heart disease wasn’t being studied, sex-specific results weren’t being published in medical journals or discussed at medical meetings.”
Chapter 4 – The New Country Called Heart Disease
♥ “My doctor once compared my uneasy adjustment since my heart attack to being like a stressful move to a foreign country. I couldn’t speak the language, I didn’t know the culture, and I had no map to find my way back home.”
♥ “Coming home from the hospital didn’t represent the end of my cardiac drama, but was instead merely the start of figuring out what else I needed to learn.”
Chapter 5 – Depressing News about Depression and Heart Disease
♥ “None of this feels like my real self anymore, like my real life, my real world. I begin to worry that the old Carolyn has truly disappeared. What if I’m unable to ever get her back?”
♥ Dr. Stephen Parker: “A heart attack is a deeply wounding event. Our swirling emotions can include relief at survival, disbelief that this has happened, grief for everything that has and will be lost, gratitude to those who helped, fear of what the future might bring.”
♥ “Heart patients who become depressed are less likely to take their cardiac medications, exercise, eat healthy, quit smoking, show up for medical appointments or cardiac rehabilitation, or follow basic medical advice to reduce the risk of another cardiac event.”
Chapter 6: “I’m What a Person With an Invisible Illness Looks Like”
♥ “Few people would be able to tell just by looking at me that I now live with significant heart disease, or that even the smallest outing with family or friends takes every bit of stamina I can muster, or that I need to nap like a pre-schooler every day just to manage the ‘new normal’ that has become my life.”
♥ Dr. Ann Becker-Schutte: “Invisible illness means that someone who is casually looking at you might not be able to see the level of pain you experience. And they probably don’t understand the effort that goes into a normal day because they have what I call ‘healthy privilege’. This allows healthy people to assume that their experience is normal, and to be unaware that coping strategies that work for them will not work for someone dealing with illness.”
Chapter 7 (the infamous chapter that my anonymous cardiologist/reviewer suggested I should delete because it was “irrelevant to female heart patients”) “One-Downmanship: You Think YOU Have Pain?”:
♥ “It turns out that there’s some sort of competitive tension around the determination of who has suffered the most. (You think YOU have pain? Let me tell you about pain…)”
♥ “Ruminating has a chilling effect on the willingness of others to put up with us. Friends and family members might respond to our ruminations compassionately at first when the health crisis is shiny and new, but this compassion starts to wear thin the longer we keep talking about the crisis. Studies suggest that ruminators report reaching out to others for support more often than non-ruminators, but ironically end up receiving less of it.”
Chapter 8: “On Being a Good Patient”
♥ “Everything I now know about heart disease I’ve learned and continue to learn since my own diagnosis. Mostly, I’ve learned how little I knew back then, and how many smug preconceptions about chronic illness I embraced. Being diagnosed with any chronic and progressive illness has a way of turning life upside down and shaking us until the smugness gradually starts to fall out.”
♥ “Academics are studying the pervasive fear among patients of being labeled as ‘difficult’. What they’ve found is that even affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations.”
Chapter 9: “The New Normal”
♥ “I’ve learned that anxiously worrying about my heart health every day can often morph into a chronic and exhausting state of being hypervigilant, that surreal fear that something bad is just about to happen. But not only is hypervigilance not conducive to feeling happy, productive, or like my old self, but it can also be damaging to my chances of overall future health.”
♥ “Very gradually, almost imperceptibly, month by month, I am starting to feel less hypervigilant. I am no longer as afraid as I once was that I’ll die in my sleep tonight. I am no longer convinced that every bout of terrifying chest pain means that today is the day I’ll have another heart attack. I might be today, but I just can’t be absolutely sure anymore.”
♥ Dr. Steven Wolin: “Resilient people don’t walk between the raindrops; they have the scars to show for their experience. They struggle – but keep functioning anyway.”
Chapter 10: “Making Peace with an Errant Organ”
♥ “Here’s my theory: few health emergencies are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in 2008.”
♥ Dr. Sonja Lyubomirsky: “Rather than life events shaping our outlook, our research suggests that life’s turning points do not have to become major crises after all. And as crazy as this might seem, the older we get, the better our chances of being able to handle any given catastrophe.”
♥ “The calming voice on the guided imagery tape invited me to quietly visualize oxygenated blood cells coursing happily through my newly revascularized coronary arteries. Instead of letting me continue to blame my heart for messing up its only job, I was now asked to say: ‘I thank my brave little heart for helping me survive what so many do not.'”
All excerpts here are from my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use the code HTWN to save 20% off the list price when you order).
♥ ♥ ♥ P.S. This book is a great gift idea for any woman you know who’s been diagnosed with heart disease! ♥ ♥ ♥
Many of these excerpts originally appeared among the 800+ blog articles here at Heart Sisters. If you quote them, please credit Carolyn Thomas, Heart Sisters and/or my book title.
- A Woman’s Guide to Living With Heart Disease: my blog-turned-book project!
- “Very different from other heart books”: my Q&A with Johns Hopkins University Press
- Read early reviews
- Dr. Martha Gulati’s fabulous foreword to my book
- “Best narrative I have ever encountered on this topic”
- Can’t wait to start reading my book? Here’s Chapter 1!
- When an illness narrative isn’t just about illness: the preface to my book