Diagnostic uncertainty: when we just don’t know

by Carolyn Thomas      @HeartSisters

The image above is all about uncertainty. It’s like a 5-step roadmap that you’d use when traveling an unfamiliar road to a new destination you know nothing about and do not want to visit.(1)  For people experiencing scary symptoms they fear might be heart-related, for example, uncertainty about what’s happening now and what will happen next is pervasive. But a new study published in the journal Patient Education and Counseling reminds us that patients aren’t the only ones facing uncertainty around a medical diagnosis: “Both patients and clinicians experience diagnostic uncertainty, but in different ways.”(2)        .        .   Continue reading “Diagnostic uncertainty: when we just don’t know”

“Be alert to both the absence of normal as well as the presence of abnormal”

by Carolyn Thomas      @HeartSisters

It isn’t often that I’m wide awake at 1 a.m. But sometimes, a dream or a fire truck siren or whatever jolts me so wide awake in the middle of the night that sleep seems suddenly impossible. When this does happen, I’ve learned that I can sometimes lull myself back to sleep by turning on my bedside radio. (Radios! Remember those?)  My old clock radio is tuned permanently to CBC, our national Canadian broadcaster. And 1 a.m. is when CBC runs the Public Radio International program called “The World” . I love that show.

It isn’t often that I hear something on The World so perfectly applicable to women’s heart attacks that I’m moved to sit up in bed, grab a Sharpie and the little stack of post-it notes beside said radio, and quickly scribble down the words before I forget what’s just been said. But this was one of those times.         .    .    Continue reading ““Be alert to both the absence of normal as well as the presence of abnormal””

Dear Carolyn: “I couldn’t tell if my pain was ‘normal’.”

by Carolyn Thomas     @HeartSisters

I happen to have a pain specialist in my family:  my darling 6-year old granddaughter Everly Rose, who studies her assorted owies very seriously. She updates me at each visit on how every scratch, scar or scab is coming along, rating the pain that each injury caused her on the playground, at summer day camp, or while playing with Homie, her cat. 

I, on the other hand, am apparently keen on NOT making a fuss, no matter what – yes, even the chest and left arm pain that continued during my own misdiagnosed heart attack.

One of my Toronto readers told me recently about the time that she too could not bring herself to describe her pain as pain.  As part of my occasional “Dear Carolyn” series of reader narratives, I’m sharing her story here. Notice how many times she avoids revealing her true pain:       .          .   Continue reading “Dear Carolyn: “I couldn’t tell if my pain was ‘normal’.””

Did you underestimate your cardiac risk?

by Carolyn Thomas     @HeartSisters

GREEHEARTI was once asked by a U.S. publisher to review a new book written by a heart patient, a memoir about her surprising diagnosis.  But about 12 pages in, she mentioned that she had been a chain-smoker for three decades before her “surprising” cardiac diagnosis.  I had to re-read that line. How could a person who had been chain smoking for decades possibly be “surprised” by this predictable outcome? Didn’t this clearly intelligent, educated woman know that smoking is a dangerous risk factor for heart disease (and a whole bunch of other nasty health issues)?   I thought of this book recently when a new study from Harvard researcher Dr. Catherine Kreatsoulas reported that women are in fact more likely than men to underestimate their own risk of heart disease.    .        .       .       .         .         . Continue reading “Did you underestimate your cardiac risk?”

Saying the word “misdiagnosis” is not doctor-bashing

by Carolyn Thomas     @HeartSisters   
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Before my cardiac symptoms forced an early retirement, my entire adult career was spent in the field of public relations, in corporate, government and non-profit sectors. Which is to say I’ve had decades of firsthand experience speaking publicly on behalf of all kinds of people. I was paid to both defend the indefensible stupidity of certain industry presidents, and also to pitch engaging human interest stories to help promote good causes.
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But it was only when I started voluntarily speaking out on behalf of other female heart patients that I encountered any real backlash – and that came from the most unlikely sources.       .          .  Continue reading “Saying the word “misdiagnosis” is not doctor-bashing”

“The doctors want my symptoms but not my stories”

by Carolyn Thomas     @HeartSisters

Marilyn Gardner, in her 2014 book called “Between Worlds: Essays on Culture and Belonging“) wrote about a compelling conversation she once had:

Yet our physicians aren’t trained to embrace our stories, but instead to ask right away, “What brings you here today?” to kick-start a brief Q&A that can most efficiently solve the diagnostic mystery sitting across from them.      .     .    Continue reading ““The doctors want my symptoms but not my stories””