Blogging sometimes feels like a cross between therapy (writing about what I’m obsessing over at any given moment) and planning a classroom lecture (getting my own thoughts in order about very specific subjects).
But if you’ve been here before, you already know that one of my favourite parts of noodling away on this blog is the interactive response from my readers. This is always a two-way street. Your comments make me laugh, they make me cry, they almost always make me want to respond. My favourite kind of reader comment: “I thought I was the only one who felt this way. . . “
But what some of you may not know is that sometimes, readers can also make me feel tired and cranky.
That statement may surprise you, until you remember that I’m a heart patient, too.
I live with ongoing cardiac symptoms of coronary microvascular disease, sometimes alarmingly bad and always frightening. Several times every week, I have to stop and ask myself if today is the day I will:
- A. have to call 911
- B. go back into the hospital
- C. die
Living like this can be, as you might imagine, exhausting.
But happily, C. has not yet happened so far. Thanks to my terrific care team of physicians, a supportive network of caring family and friends, my often-reluctant acceptance of the need to learn p-a-c-i-n-g, and my trust in pain self-management and the team at my Pain Clinic, I can manage nicely most days – even on the bad ones. In between, I can noodle…
Back in 2009 when I launched Heart Sisters, I had no vision, no strategic plan, no clue that this blog would grow to its current size, or that it could ever attract millions of views from 190 countries! See also: Fun facts about my women’s heart blog . This began as a static 3-page site meant for the women who were signing up to attend one of my free Heart-Smart Women presentations.
Then I started some “value-added” content, a little blog post here, another one there, reflecting the most common questions women were asking during my talks. I’ve gone from running a new blog post every day (most likely due to the temporary insanity of the freshly-diagnosed) to once a week, typically early on Sunday mornings.
But while I was working on my book (“A Woman’s Guide to Living With Heart Disease”, Johns Hopkins University Press, 2017), I found it impossible to write my manuscript full-time as well as creating weekly blog content here.
So for almost two years, I ran old posts each week from my Heart Sisters archives, hoping that these might be enough to keep my loyal regulars interested and still appeal to new readers.
Some of my regulars noticed that things seemed different around here, and many of you let me know how you felt about it.
When I did write an occasional original post during that time, some readers didn’t share my emboldened opinions on women’s cardiac research, diagnostics and treatment news. (Don’t get me started on why we still don’t have mandatory reporting of diagnostic error, for example!)
Or, as one irritated reader commented:
“Carolyn, who cares what YOU think?”
Well, I used to assume that if somebody comes to my site, and reads an article that I wrote, it means that they might care what I think. Evidently, not always the case…
Tellingly, when I dared to briefly mention my political views in one of many articles I’ve written about the pervasive gender gap in cardiology, for example, a recent reader fumed:
“I read your blog to learn more about women’s heart disease, NOT to hear your political opinions.”
I’ve had a number of readers threaten to boycott my blog (“FOREVER!”) because something I wrote “surprised” them (or more frequently, “disgusted” or “outraged” them).
But the worst cut of all: when they let me know in no uncertain terms that I have somehow “disappointed” them.
Among the most “disappointed” are often my male followers, a small number of whom can be counted on to offer some variation on “But what about the MEN?” in response to emerging research I write about if it’s specifically on women’s heart disease. Spoiler alert: it always is!
Or, as one of my book reviewers (Robert in Australia) succinctly criticized:
“A bit too much emphasis on how women are neglected when it comes to heart disease. Happily, for me and my fellow patients, my doctors, nurses and physios did everything by the book.”
(Thank you, Robert, for helping to prove my frickety-frackin’ point).
Not surprisingly – and as I already knew because of the many other blogs that I like to follow – readers follow a blog because of what they can get out of it. (And in my own case, I also want good grammar, spelling and punctuation, thank you very much!)
Readers generally want to be informed, and supported, and understood, and validated – and yes, “inspired”.
This expectation to inspire is very problematic for me.
My sole blogging job, in the minds of some readers, is to inspire them. Not to express opinions that they may not share. Not to say what I really think. Not to be “me”.
Similarly, when the anonymous cardiologist at Johns Hopkins University reviewed my original book manuscript draft outline, the feedback was very positive (“This book will be a valuable addition to the literature!”) – except for concerns expressed about two specific chapters:
- Chapter 3 (on misdiagnosis): “Sounds like doctor-bashing to me!”
- Chapter 7: (on psychosocial effects of living with a chronic and progressive illness): “Irrelevant to female heart patients.”
(By the way, I think you might catch a whiff of irony here when a cardiologist tells a female heart patient what is or is not relevant to female heart patients).
In both cases, I had to strongly defend these chapters to my JHUP editors. It would be a great disservice to any women reading this book, I argued, to ignore the many studies reporting that female heart patients are significantly more likely to be misdiagnosed compared to our male counterparts. “I’m not making this stuff up!” I once had to insist to my senior editor. (And I’m relieved to report that she agreed, and both chapters did remain in the book!)
So all during this time, I was not only feeling wiped out from the deadline pressure of producing 70,000 words for my Johns Hopkins University Press editor on time, but from the ongoing maintenance of this blog.
For example, every comment from every reader here is moderated, meaning that when you hit ‘submit’, your comment is not published immediately, but only after I read it. This helps me weed out spam, trolls and hypesters who are selling miracle cardiac cures (you know, the ones that your doctor doesn’t want you to know about. . . )
It has surprised me sometimes to get identical serial comments from the same reader, demanding to know why the comment submitted at 7:26 p.m. is not yet up on my site by 7:36, and then by 7:46, and so on.
Perhaps these readers think I run a 24/7 hotline service here. But no, it’s just me, in my kitchen, quite often in my jammies, and only when I’m feeling well enough to be here. Sorry, not sorry. . .
I’m very active on social media, particularly Twitter. One morning, when I quoted word-for-word Harvard researcher Dr. Catherine Kreatsoulas on how women describe their cardiac symptoms to Emergency physicians, one particular Emergency doc in New Jersey (Rick Pescatore, DO) became so upset by what I’d quoted that he sent me 12 (yes, TWELVE) tweets in rapid fire succession (must have been a slow day in his ER) attacking what he considered “your particular style of sensationalism”, and calling me the following names:
No matter how many times I responded politely (I am Canadian, did I mention?) suggesting that he take a look at the Harvard study himself, he responded with more name-calling. He clearly felt the need to put me, a stupid patient, in my place. For quoting a Harvard study.
My friends at the Canadian Public Relations Society told me they weren’t surprised when I started Heart Sisters in 2009 to write about my own experience of heart attack misdiagnosis and survival – and especially about what I’d learned while attending the WomenHeart Science and Leadership patient advocacy training at Mayo Clinic.
Some of those PR colleagues, in fact, concluded that this is simply what happens when a longtime PR person like me has a heart attack: she writes and speaks and looks stuff up. Because that’s all she knows how to do!
But “inspire”? That’s a tall order.
“This commitment is neither a sign of virtue nor of will. I would trade that commitment in one hot second to not have been sick in the first place.”
“Every EDS patient knows that the hardest part of our day is the moment we open our eyes and awaken into the reality of our bodies. The fact is that sometimes I’m in a physical state where I just don’t have it in me to be inspirational.”
It was the death by suicide of Anthony Bourdain last year that hit home for me the inherent problem with our common preference for feeling “inspired” by those we don’t even know. Among the countless online condolences, I liked this particular observation from Imani (a blogger at Crutches and Spice, a student, and an advocate for disability issues):
“I am ashamed to say that I saw Anthony Bourdain as my inspiration. I only saw what I could learn from him. I’m ashamed to say I was inspired by him because that meant I couldn’t see the man, beyond what he could do for MY life. I’m ashamed to say he was an inspiration, because I never was able to see him as a just a person.”
Just a person.
Not an inspiration. Not a role model. Not somebody who needs to think or talk or be a certain way so that strangers will approve.
And shouldn’t all of us expect to be treated as just a person?
Q: As a patient, do you ever feel pressured to be “inspiring”?
NOTE FROM CAROLYN: My book “A Woman’s Guide to Living with Heart Disease” reads like a “best of Heart Sisters” blog collection. You can ask for it at your local bookshop or public library, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
- Please! No more bragging about mountain climbing!
- Non-inspirational advice for heart patients
- Confessions of a non-compliant patient
- The new country called Heart Disease
- “To just be a person, and not a patient anymore”
- ‘Healthy Privilege’ – when you just can’t imagine being sick
- Everybody has plans ‘til they get punched in the mouth
- Living with the “burden of treatment”
- Looking for meaning in a meaningless diagnosis
- Fun facts about my women’s heart blog