The shocking American Heart Association National Survey results released in September reported that women’s awareness of heart disease has actually declined during the past decade. As my regular readers already know, I felt sick when I read this. Barely half of the women surveyed, for example, could recognize “chest pain” as a possible sign of heart attack. It took a wee lie-down before I was able to re-evaluate my own awareness-raising efforts here on Heart Sisters. At first blush, it appeared to me that I’m aiming to reach two specific kinds of women. . .
The first group includes freshly-diagnosed newbies, the ones whose strange and frightening first symptoms are recognized as cardiac in origin, who seek emergency help, are hospitalized, treated, and then finally sent back home, overwhelmed and stunned. Then there are the veterans like me, whose cardiac events were diagnosed and treated a while ago, who by now have some lived experience and continue to speak and learn more about what happened and why.
When I look at the most popular Google search terms tallied by my blog host WordPress (these are the words you type in that bring readers to this site in the first place), the top terms include things like “Am I having a heart attack?” The posts that Google then takes them to here include this one, the most-read blog post since I wrote it in 2009: “How Does it Really Feel to Have a Heart Attack: Women Survivors Answer That Question.“ Its readers are what I call my 3 o’clock in the morning folks, the newbies who are suddenly experiencing unusual symptoms so scary that they turn to Dr. Google – and find this post.
When I look at my reader comments, however, it’s clear that most comments are typically left by that second group, the veterans who have been living with heart disease for some time. Readers who already have lived experience speak up in response to posts about real life issues like post-stent chest pain, pacemakers, post-heart surgery trauma, living with crushing fatigue, or why their heart disease was misdiagnosed. Many of those women are regular subscribers by now who have found their own generous community of “veterans”.
I knew from the first day I launched this blog that it wasn’t meant to be an encyclopedic text on All Things Cardiac. I also knew that many skilled healthcare professionals far above my pay grade were already writing about cardiac risk factors and how to address them – so I wrote less on those issues and more on what others weren’t writing about.
When I was a freshly-diagnosed newbie myself in 2008, I too went online, desperate to figure out how I’d been misdiagnosed with acid reflux in mid-heart attack and sent home from Emergency – despite my textbook cardiac symptoms of central chest pain, nausea, sweating and pain down my left arm. As I wrote in the preface of my book:
“I wasn’t looking for info on cardiac risk factors or heart-healthy recipes or bad cholesterol. What I desperately wanted to find was information written for and by women like me.”
European researchers, among many others, suggest that we not only need to adjust physically to an unexpected medical diagnosis, but our whole psychological and social self-concept requires adjustment, too.(1) They’ve identified predictable phases of recovery, including slip-sliding back and forth in a two-steps-forward-and-three-steps-back dance. During the early weeks and months, phases go from the newbie’s distressing hypervigilance while waiting for “the other shoe to drop” to the veteran’s confident ability to better plan for the future.
In other words, overnight we can go from being a once-healthy person to suddenly becoming a sick patient – a seismic change that nobody can psychologically prepare for. See also: “To Just Be a Person, and Not a Patient Anymore”
My veteran blog readers frequently point to their one-year anniversary, post-cardiac diagnosis (what I like to call their first “heart-iversary”) as one of the first meaningful milestones along this road to recovery. Not necessarily our old normal, but far more “normal” than we felt while worrying we’d never see normal ever again.
This recovery can vary, of course, person by person; some people seem to recuperate remarkably uneventfully post-diagnosis, while others take a whole lot longer to feel even remotely like their old selves.
Many physicians, by comparison, seem to use a different type of predictive crystal ball when their heart patients ask them, “Doc, when will I feel like ME again?”
Physicians may describe, usually in terms of short little weeks, a minimal recuperative time period after which their patients can happily return to work, or start driving, or have sex, or fly off on holidays once again. See also: “A Patient, a Caregiver and a Doctor Walk into a Bar”
So by the time most of my veteran readers find their way here, they often have stories and opinions to share about their lived experience so far, especially the important quality-of-life issues that, for many reasons, they may NOT be talking about to their cardiologists.
Which brings us back to the disturbing results of that AHA National Survey (you can read about those survey results here: “Women’s Heart Disease: An Awareness Campaign Fail“).
If raising awareness by sharing information about women’s heart disease is NOT WORKING to raise awareness (an official AHA commentary written by three respected cardiologists bluntly called the decline in awareness “a decade of lost ground”), then why would I want to continue to share information here?
But this AHA survey was in fact aimed at a third group of women: those who are not heart patients. Yet.
What I know about this third group, because I too was a member of it for most of my adult life, is that women are no more likely to be interested in learning about heart disease than they’d be in any other subject they believe is irrelevant to them.
So the reality seems to be that I write for three types of women – because I’ve been in all three groups myself. And I have long observed here that my writing topic focus has evolved over time to reflect how I’ve been changing, too – and how those topics also reflect what I wish I’d known (but like many other female heart patients, didn’t even think to ask about) way back when.
It’s why I continue, not surprisingly, to write about emerging studies on misdiagnosis in women’s heart disease, for example.
Study after study, report after report, scientific statement after scientific statement continue to confirm that women heart patients are at significantly higher risk than men of being under-diagnosed – and worse, often under-treated even when appropriately diagnosed. All women who have been misdiagnosed already know this, while at the same time, not all physicians believe or even entertain that reality as a possibility. I know this because these physicians have openly called me names on social media when I do write about misdiagnosis. If they did believe the research, we’d have mandatory reporting of diagnostic error as a routine issue of public safety.
Not being taken seriously is behind this and other examples of the cardiology gender gap. When researchers analyzed four years of data from the National Emergency Medical Services Information System, they found that, when an ambulance is transporting a female heart patient to the Emergency Department, EMS staff are far less likely to have their sirens or flashing lights turned on compared to when a male heart patient is in the back of the bus.(2)
How is that even possible?
This and many other examples of gender bias in cardiology have been going on for years, decades, generations – and this must stop.
I hope to see it stop within my lifetime, and I hope that I can do my own small part in helping to stop it. I don’t know how to do this except through my writing and public presentations. Whether it’s reminding our veteran heart patients to speak out about what they’ve learned, or encouraging our newbies to pay attention, both groups need to become their own best advocates if we’re ever going to help get that third group of women up to speed.
Because as cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, wrote just last year on Twitter:
1. G. Graffigna and S. Barello, “Spotlight on the Patient Health Engagement model (PHE model): a psychosocial theory to understand people’s meaningful engagement in their own health care.” Patient Preference & Adherence, July 19, 2018. 12:1261-1271.
2. Lewis, Jannet F. et al. “Gender Differences in the Quality of EMS Care Nationwide for Chest Pain and Out-of-Hospital Cardiac Arrest.” Women’s Health Issues, December 10, 2018.
Image: Mabel Amber, Pixabay
NOTE from CAROLYN: I wrote more about becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease“ , published by Johns Hopkins University Press in 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 order it directly from my publisher (use their code HTWN to save 30% off the list price).
Q: How are the concerns you have as a veteran heart patient different from when you were a newbie?