A Woman’s Guide to Living with Heart Disease

It’s my great pleasure this month to interview Carolyn Thomas, journalist, blogger and heart health advocate. Her popular Heart Sisters blog was recently turned into a book, A Woman’s Guide to Living with Heart Disease. As a heart attack survivor Carolyn is on a mission to educate women about their heart health.

Hi Carolyn, can you tell us a little more about why and how you decided to create your blog Heart Sisters?

C.T. I launched Heart Sisters in 2009 as a static 3-page site for local individuals and groups wanting to book my presentations about women’s heart health. I had no clue that anybody outside of my hometown of Victoria here on the west coast of Canada would ever read it.  At the time, I’d recently graduated from the WomenHeart Science & Leadership Symposium for Women with Heart Disease at the prestigious Mayo Clinic, and I was very busy sharing what I’d learned during my Mayo training at these local presentations. I called these weekly talks my “Pinot & Prevention” events (booked at least three months in advance!) A reviewer at the time described my talks as “part cardiology boot camp, and part stand-up comedy!” I felt overwhelmed by the response, and I was also a heart patient living with ongoing cardiac issues! But there clearly seemed to be growing public interest in this topic! I started the blog using a free WordPress template mostly to share info about how to book one of my talks so I wouldn’t have to spend so much time on the phone! A few months in, it struck me that perhaps I should add some meaningful value-added content too, covering some of the more popular questions women were asking me during my heart presentations.  And here we are now, eight years and over 700 blog articles later, with over 12 million views from 190 countries!

That’s impressive! What do you think are some of the benefits for patients who blog?   

C.T. I suspect that many patients who start a blog do so for its therapeutic value. I’ve seen you describe it as “writing to heal”. We’re trying to somehow make sense out of a life-altering diagnosis that makes no sense. It’s also been said that when something terrible happens, the only good that can come of it is if you’re able to make things better for others because of it. And I love the remarkable sense of community that can emerge over time between my blog readers and me, and (even better!) between each other!  When I wrote in 2015 about the birth of my first grandbaby (our darling Everly Rose), I was moved to tears by comments coming in from so many women I’d never met, who were so happy sharing in my own joy.

Not everyone is comfortable with the term “survivor” to describe their experience. I’m curious to know what you think. Is there a “survivor mentality and/or personality”?

C.T.  Sometimes people who are introducing me at a conference or at an after-dinner presentation ask if I mind being referred to as a “survivor”. Considering the alternative, I don’t mind at all. I did survive. I survived being misdiagnosed in mid-heart attack and sent home from Emergency. I survived what doctors still call the “widow maker” heart attack (notice they don’t call it the “WIDOWER maker” when it happens to women like me!)  I survived what many do not.  But I didn’t survive it because I thought positive thoughts or had a better attitude than those who didn’t survive what I did.

We hear about the Survivor mentality (good) when it’s typically contrasted with the Victim mentality (bad). This makes some sense when we’re talking about human resilience, but honestly, there are few things less motivating or inspirational to me than listening to some chirpy survivor brag about doing triathlons or climbing mountains despite having survived ______ (insert horrific medical diagnosis/procedure here) while everybody applauds his/her spunk and winning attitude. Nobody supports wallowing in self-pitying victimhood, but the distressing implication when believing in a survivor mentality is that if only those poor unfortunates who died of the same horrific diagnosis had somehow tried more, been braver, worked harder, thought happier thoughts, etc., well, they might still be alive today. Heart disease last year killed about six times more women than breast cancer did – and those women who died (some of whom were my friends from our Mayo class of 2008) are no less brave than those, like me, who have been lucky enough to survive. So far.

Do you see any commonality in the experience of surviving a heart attack when you read cancer survivorship blogs?

C.T. I can’t speak for all survivorship blogs, of course, but I can say that the sense of not being the only one feeling this way can be a huge relief when we read somebody else describe what we’ve been going through, too –  especially for those I like to call the ‘freshly-diagnosed”.  One of my blog readers left a comment, for example, that simply asked: “Oh my God! Are you ME?”  Another important theme is that many patients facing a catastrophic diagnosis – no matter what that diagnosis might be – are suffering a sudden and profound loss of self, complete with an awful sense that my old self, who I was and how I identified myself in this life, has somehow crumbled away, but leaving nothing in its place to replace it yet –  that stark Before Diagnosis and After Diagnosis difference. I once described it as being like taking a trip to a foreign country we never, ever wanted to visit.

I agree with you – that sense of not feeling so alone in our illness is powerful. Do you think that the reach of our blogs can extend further, perhaps even influence the practice of healthcare?

C.T. I sure hope so!  For example, I’m a person who likes evidence, so both my Heart Sisters blog articles and my book contain detailed medical journal references to support research that I mention. I think it’s one of the reasons that Johns Hopkins University Press first asked me in 2015 to write a book for them based on my blog articles. I’m not a physician, but I include hundreds of citations in my book so that the women who show these to their physicians can feel comfortable sharing science-based medicine – not woo-woo snake oil.

I also have a couple of pet peeves I love to write (and rant!) about:

  1. the shockingly low rates of doctor referrals of eligible heart patients to life-saving cardiac rehabilitation programs
  2. the alarming failure of our healthcare system to implement mandatory reporting of diagnostic error

My fondest hope is that if I keep ranting about these two areas, and quoting every emerging study that validates the rant, someday both of these appalling situations will be finally addressed.

But I must tell you that one striking example I’m aware of on how my blog has influenced medical practice is a comment I received from a senior American paramedic who teaches emergency medicine to trainees. When I wrote a blog article about how women heart patients are treated differently in the back of the ambulance en route to hospital compared to their male counterparts experiencing identical symptoms, he wrote to me: “Carolyn, this stops today. With me! No more!” adding that his teaching curriculum would be immediately changed to reflect the study findings I’d written about. Something I wrote hit home for this man, who happened to be in a position to influence the education of future care providers. Wow!

Wow that’s incredible. It makes me so happy to know that there are health professionals out there who are paying attention to what we have to say online. I would also hope that in reading patient blogs they would come to a better understanding of the psycho-social aspects of serious illness. Do you think health professionals often ignore those aspects of illness which lie outside of the physical?

Yes. Next question?

Seriously, some physicians (particularly specialists) seem to forget that there is a whole entire person attached to the organ they happen to be focused on. As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained: “Cardiologists may not feel comfortable with touchy-feely stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.” I wrote a lot about this reality in my book, starting with wishing that I’d know before hospital discharge that post-heart attack depression is not only common, but also temporary and treatable. Mental health researchers call this ‘situational depression’. But not one person in that hospital – no doctor, no nurse, no janitor – nobody had warned me about the emotional and psychological fallout of such a life-altering medical crisis. It was five long months later when I showed up at Mayo Clinic that I finally learned that up to 65% of women with heart disease experience debilitating mental health symptoms after hospital discharge, yet only 10% are appropriately identified and treated.

That’s a sobering statistic. I believe we need to address these issues right at the point of diagnosis. What advice would you give to someone who is newly diagnosed with a serious illness?

C.W. That’s a frightening and surreal time for most of us. Let me quote my Alaska friend, Dr. Stephen Parker, who is both a cardiac psychologist and a survivor of multiple heart attacks himself, who says it beautifully when he talks about the “swirling emotions” that surround the freshly-diagnosed:

    • relief at survival
    • disbelief and anger that it happened
    • grief for everything that was and will be lost
    • gratitude to those who helped
    • extreme vulnerability in a previously safe world
    • fear of what the future might bring

So much depends on the diagnosis, the prognosis, the treatment plan, and the patient’s support community (if any). It can take a while for protective denial to wear thin so that we can begin to grasp, little by little, what is actually happening to us. It can feel like a roller coaster of ups and downs (mostly downs) in the early days. What I tell my own readers is this: your only job now is to become the world expert in your unique diagnosis. Knowledge truly is power, especially for women. And also – go outdoors. Spend as much time as you possibly can walking in nature. This won’t change your diagnosis at all, but you’ll be breathing fresh air and feeling the wind on your face.

We both share a low tolerance for certain metaphors used to describe illness. What are some of the metaphors you dislike the most? Do you think the language we choose to describe illness is important?

Thanks for asking about this. Language IS important!  In cardiology, for example, doctors talk blithely about the condition they call “heart failure” – as if they are utterly unaware how devastating those words can feel to a patient who hears them. Your heart is FAILING. Many  report that they feel unsure if they can even walk to the car after that. Doctors will also refer to patients who “failed” their treadmill stress test” or “failed the medication protocol”. Doctors use combat metaphors (“battling cancer” or “she’s a fighter”) which can make patients whose conditions decline feel like they’re clearly not fighting hard enough, or are somehow doing this wrong.

Do you think that patients sometimes don’t challenge their doctors because they fear they risk being labelled difficult? What advice would you give them and the healthcare professionals who treat them?

C.T. I believe this fear of being labelled a “difficult” patient is an overwhelming reality for far too many patients, and especially for women who have been socialized to be nice, to not make a fuss, to put the needs of others ahead of our own.  I like to quote landmark research published in the journal Health Affairs on this very subject.(1) This study was on how patients approach shared doctor-patient decision-making; the participants studied were wealthy, highly-educated residents of Palo Alto, the centre of Silicon Valley and home to the prestigious Stanford University. Yet the astonishing conclusion from researchers was the “fear of being categorized as ‘difficult’ prevents patients from participating more fully in their own health care.” Yes, even wealthy, educated, capable confident types!  And we are wise to avoid being seen as “difficult”. It turns out that another study last year suggested that diagnostic error rates actually go up if your doctor considers you to be “difficult”.(2)

How to get past this reluctance? I like to ask my Heart-Smart Women presentation audiences to guess what I would have done had it been my daughter or my sister or any other woman I love experiencing the same cardiac symptoms I was having? Like me, they agree that they’d be screaming blue murder to get the help this other person deserved, with no thought whatsoever of being labelled as “difficult”. We need to be as strong and as diligent about getting help for our own medical needs as we’d be if we were trying to get help for our loved ones.

Finally Carolyn, your blog has captured hearts and minds across the globe – and now it has been turned into a book! Do you have any advice for any of our readers who might like to turn their own blog into a book?

C.T. I’d never even dreamed of writing a book based on my blog – right up until I was approached in September of 2015 by the Executive Editor of Johns Hopkins University Press (JHUP – the oldest academic publisher in North America!) who asked me out of the blue if I’d consider writing a book with them based on my blog articles. One of the many follow-up conversations I had with her over the next few weeks included this question: “Why would anybody buy a book when they could get most of the content for free by visiting my blog?”  That’s a good question for bloggers to ask themselves about their own project. I know a number of bloggers who have self-published their own blog-turned-book. There are pros and cons of each option: self-publishing vs. being published by an established traditional publisher. One thing I felt strongly about was that, even though my book is based on excerpts from hundreds of my original blog articles, I needed a very clear 10-chapter table of contents outline that carefully outlined the specific focus of each unique chapter.

What you don’t want to see is a series of disjointed chunks of your blog that look like they’ve been lifted willy-nilly and then tossed together like yesterday’s salad. Prepare to write lots of new transition sentences/paragraphs that will seamlessly link otherwise separate excerpts. This is much harder than you’d imagine! Also, as another blogger-turned-author Alice Callahan told me about writing her own book based on her “Science of Mom” blog: Don’t lose the unique ‘voice’ that you use in your blog writing.

Thank you Carolyn for taking the time to share your experience with our readers. It’s been a pleasure to interview you and learn from your story.

About The Book

A Woman’s Guide to Living with Heart Disease by Carolyn Thomas is published by Johns Hopkins University Press. It’s available in paperback, hard cover and eBook formats. Readers can save 20% off the list price by using the code HTWN when ordering directly from JHUP: https://jhupbooks.press.jhu.edu/content/womans-guide-living-heart-disease


Refs

  • Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making. Dominick L. Frosch et al. doi: 10.1377/hlthaff.2011.0576 Health Affairs. May 2012; vol. 31 no. 5 1030-1038.
  • Do patients’ disruptive behaviours influence the accuracy of a doctor’s diagnosis? A randomised experiment. S. Mamede et al. BMJ Qual Saf doi:10.1136/bmjqs-2015-00410. Online March 7, 2016.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
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