by Carolyn Thomas ♥ @HeartSisters
For weeks following hospital discharge after my “widow maker” heart attack, I kept forcing a “Fine, just fine!” smile when around others each day, desperately trying to make sense out of a cardiac diagnosis so shocking that it made no sense to me. What I later learned was that sense-making turns out to be a remarkably common early response to a serious medical crisis.
Most of us just aren’t experienced enough to be competent in handling this kind of crisis. Influences like our personality, adaptability, communication skills, medical history, family support and many other factors impact how we will react over time. But there’s one competency that’s far less talked about during recovery – self-reflection.(1)
“Self-reflection is a so-called ‘soft skill’ that requires us to ‘sit with ourselves, thinking about what has just happened, what worked, what didn’t, what can be done in the future, and what can’t. We can also become more aware of our inner experiences, and how they are impacting our responses.’ “
I often advise my readers and my “Heart-Smart Women” presentation audiences that once you’ve been diagnosed with heart disease, your only job is to become the world expert in this diagnosis. Whenever anyone tells me: “I received no information from the cardiac nurses before hospital discharge!”, I read that as a sign to get busy. Blaming others for what did or didn’t happen will not change the present, but seeking solid, credible information about your own diagnosis will. I like to recommend Cardiac College for Women (affiliated with the University of Toronto) as a useful free resource to start.
Researchers have been studying something called models of illness recovery for years, described by academics like Morse & Johnson in their landmark 1991 book,
These models apply to all kinds of serious illness. The research suggests that, in general, most people with a serious acute illness will likely progress through four identifiable sense-making stages when facing a medical crisis. (Remember that every person is different, so you may or may not experience each of these four stages):
1. uncertainty – we try to understand our condition and its severity
2. disruption – we realize that we’re affected by a serious disease and may experience high levels of stress
3. striving for recovery – we may try to gain control over our illness with the help of personal and outside resources
4. restoration – we attain some level of equilibrium as a result of accepting the illness and its consequences
Apparently, hearing a confirmed diagnosis during that second disruption stage is when patients are most likely to experience the strongest emotional upset.
The University of Washington Medical School’s Ethics in Medicine program includes an important class called “Breaking Bad News.” UW med students are warned that patients hearing a frightening diagnosis can almost always recall – even decades later – in exquisite detail, word-for-word, precisely how their diagnosis was delivered by a physician. That’s how powerful this message can be.
I may not be able to remember what I had for dinner last night, but I will never forget the exact words used by the cardiologist who was called to the Emergency Department to see me in mid-heart attack. He sat down at my bedside, introduced himself, took my right hand in both of his own hands (a touching gesture, I thought) and started off my cardiac diagnosis like this:
“Mrs. Thomas, I can tell from your T-waves and other cardiac test results that you have SIGNIFICANT HEART DISEASE.”
Boom! From there, he gently but quickly explained my clinical options, benefits and risks of each option, and answered my only question (which was, oddly: “So, should I make an appointment while I’m here to come back another day for this procedure?” – to which he firmly replied: “NO! We’re taking you upstairs NOW!”
On the other hand, here’s a perfect example of how NEVER to deliver bad news, as described by the late U.K. physician Dr. Kate Granger.
Dr. Kate was diagnosed with a rare and aggressive form of abdominal cancer. She told a now-famous story about the physician who walked into her hospital room to tell her the bad news that her cancer had spread. This man did not introduce himself to her, did not make eye contact with her, and swiftly fled the room immediately after making his announcement. She was stunned by that news, but also by that doctor’s appalling behaviour. Dr. Kate died on July 23, 2016 at the age of 34, but before her death, she was able to kick-start what would soon become a worldwide compassion campaign called #HelloMyNameIs. This movement reminds all healthcare staff to remember the most basic of human courtesies: introduce yourself by name to your patients.
Whether our doctors introduce themselves or not (and in my personal experience alone, many healthcare professionals still do not bother), how do we self-reflect and learn to make sense of a life-altering medical diagnosis?
Here’s how the academic Driscoll Model of Learning theory back in 1994 summed up self-reflection with three little questions:
♥ What?
♥ So what?
♥ Now what?
Dr. Tanya McCarthy interprets those three Driscoll Model questions in her publication called “Levels of Reflection: The Mirror, the Microscope and the Binoculars.”(2)
What? – becomes the mirror, showing us exactly what has happened, reflecting our feelings about our personal strengths, weaknesses and challenges we learned while getting through what’s just happened.
So what? – becomes the microscope, helping us to describes in detail our experience, what we learned both from this experience and specific actions we could take in the future.
Now what? – becomes the binoculars, revealing a connection to learned transferable skills we can now count on longterm.
My blog readers often point to their one-year anniversary, post-cardiac diagnosis (what I like to call our annual “heart-iversary”) as a meaningful milestone along the road to recovery, the time when they generally begin feeling “normal” once again. This milestone can vary, of course, person by person: some people seem to recuperate remarkably uneventfully post-diagnosis, while others take longer to feel like their old selves. See also: The Familiar Self, the Unfamiliar Self and the Recovery of Self
Self-reflecting on our recent cardiac diagnosis can help us “slow down, turn inward, and gain insight into our own thoughts, emotions and behaviours.”
And as Bruce Springsteen once sang, “You get used to anything. Sooner or later it just becomes your life.”(3) Although the freshly-diagnosed heart patient might not believe this, Bruce was surprisingly correct – as I’ve written here:
Since surviving a misdiagnosed heart attack in 2008, I’ve observed a bizarre and surprising change in my ability to adjust to the ongoing cardiac symptoms of coronary microvascular disease. After 16 years, chest pain that would send the average person screaming to the Emergency Department, for example, is just an average day for me now.”
See also: Brain Freeze, Heart Disease and Pain Self-Management
My painful symptoms have not changed. But at some point, I somehow got better at adjusting.
♥
1. Bailey J.R., Rehman, S. “Don’t Underestimate the Power of Self-Reflection”, Harvard Business Review, March 4, 2022.
2. McCarthy, T. “Levels of Reflection: The Mirror, the Microscope and the Binoculars”. International Journal of Self-Directed Study: Volume 10, Number 1, Spring 2013.
3. ©Bruce Springsteen lyrics, “Straight Time”, from The Ghost of Tom Joad, Columbia Records, 1995.
♥
Heart mirror image: Braite, Pixabay
Q: Have you had a medical diagnosis you can recall word-for-word years later?
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NOTE FROM CAROLYN: I wrote much more about the adjustment to becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or bookshop (please support your favourite independent booksellers) or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Heart Sisters 
As always, so relatable. I shared on Threads. Singing your praises over there. 🥰
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Thank you Cheryl for your kind words – and also for “singing my praises!”
I’m glad you could relate! I hope you are feeling better day by day this summer! ❤️
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When I went to my ophthalmologist without an appointment and insisted on seeing him because my eye was bothering me, he said, “I’m glad you came in to see me today. I see squamous cell cancer.”
While I sat there, he wrote a consult note and called the physician he was sending me to see. He explained to me why he was sending me, how to get there, and that I would be seen as soon as I got there. Hours later, driving home, I was thinking about how I was going to explain everything.
My husband, a good friend and my son, visiting from out of town, were waiting for me. I was always the support person so I had to present things in a calm, we’ll-manage way.
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Wow! So many elements of your story fell into place at just the right time. You followed your gut feeling that you needed to see your ophthalmologist right away, he swiftly identified the cause of your issue, arranged the next consult himself, and then your family was waiting together to support YOU for a change!
Sometimes, it’s the support person who needs support, too – often an unfamiliar role for many of us!
I hope you are doing better now.
Take care . . . ❤️
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Back in 2006, I referred myself to a cardiologist because my Primary Care Doctor had shrugged her shoulders at the unbalanced washing machine in my chest, with exertional dyspnea and chest pain. ( I will NEVER forget that shoulder shrug!!!)
I knew the cardiologist from my work as a nurse; he was kind and wise and we already knew each other by name. At our first meeting, he could not make a diagnosis. He needed more tests. I was scheduled for several tests in his office a week later and he said he would see me right after the tests.
The next week, after all the tests, I was sitting in the waiting room with a bunch of other patients, just waiting to get to see him, when he pops out into the waiting room and says, “Don’t worry, it’s only Hypertrophic Cardiomyopathy. We’ll talk about it when you get back to the exam room.”
Me: Left in SHOCK! Thinking What the heck is Hypertrophic Cardiomyopathy?
Our subsequent talk in his office was very detailed, very informative and very kind. He explained the diagnosis, the usual course of the disease, the medications, the possibility of needing surgery. It couldn’t have been more helpful.
Why did he blurt the diagnosis out like that? All cheery and relieved?
I guess he must have been worried that I had something more terrible? Or thought, as a nurse I understood HCM and wouldn’t be shocked? I’m not sure what was on his mind in that moment.
Most likely he was addressing me as a nurse/colleague and not a patient.
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Hello Jill – Good Grief! Announcing your diagnosis in front of a waiting room filled with other patients!? I can see why you’d be plenty worried despite that “Don’t worry!” greeting – and his very public disclosure of your diagnosis! What was he thinking?
I suspect you’re exactly right – what he was NOT thinking about was you as an “average” patient but as a colleague, which in my opinion, was a significant error in judgement. Few if any of even the most experienced medical professionals can interpret a serious diagnosis when it’s aimed directly at YOU in the same dispassionate way you are able to when discussing a stranger’s condition. He may have indeed been feeling genuinely “cheery and relieved” but it seemed that his comment made the diagnosis all about HIM and his reaction to your diagnosis – not all about his PATIENT, as we would all expect.
(I’ve observed that, no matter how many years of clinical experience working with, caring for, and listening to the patients they may have, physicians, nurses and other healthcare professionals inevitably report a “Eureka!” moment when facing their own health crises).
They can no longer feel like the “colleague” of the professionals taking care of them. As I wrote 10 years ago in the BMJ:
“They often announce to their colleagues, for example, that hospitals are demoralizing, medical procedures frightening, lack of dignity embarrassing, symptoms distressing, dependence humiliating, the simplest of tasks exhausting, anxiety relentless, their past as a healthy person but a dim memory, and a future seeming bleak and uncertain.”
Your cardiologist temporarily demonstrated an absence of empathy for how YOU THE PATIENT would feel about his surprising and very public diagnostic announcement! I’m glad that his behaviour once in the exam room was so positive for you. Did you ever discuss your shocked reaction to his “popping in” behaviour?
Take care Jill ❤️
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No, I didn’t. Although the shock embedded it in my brain. . . I was more concerned at our appointments with myself and my need to understand and live with my diagnosis so I never took advantage of the teaching moment.
He was such a good cardiologist, it just disappeared into the background and I really never thought about it again.
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Of course! That makes sense – plus it requires more energy to engage a physician in that “teaching moment” – which newly diagnosed patients rarely have much of at the time!
I hope that other physicians who read your important comment here will also take its protection of privacy message to heart – literally! – to help understand what’s going on with their future heart patients (whether they’re colleagues or not!) to avoid that kind of very public interaction! ❤️
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Thanks for this, Carolyn.
In February, after Dr. Soo Kim diagnosed me with FMD (fibromuscular dysplasia, a vascular condition that can cause dissections, aneurysms, etc.), she gave me a packet of information, with handouts providing info about the condition for me, other handouts for my other doctors, for my friends and family, and info on where to get a medical bracelet.
I went home and took everything to a copy shop to make multiple copies. Then, I gave copies to friends, family, doctors. It saved me from explaining things repeatedly and also let people know that this is a significant diagnosis.
One of my girlfriends keeps the pamphlet in her wallet so if something untoward happens while we are together she has detailed information on hand. Of course I have the medical I.D. too. But I have to applaud my doctor for being so proactive and providing written accurate information at the time of diagnosis..
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Hello Helen – I too am applauding your doctor. I have to say that this level of take-home comprehensive diagnostic information is probably rare in medicine!
It’s also important that this info is printed, because we know that patients are often so overwhelmed by such a traumatic experience that – had the same info been communicated to you only in person at the time – it’s unlikely you would have retained it. With your pamphlets, you could re-read and review the material for days or weeks. Our local hospital’s cardiac social worker told me that many of her clients are smiling and nodding during their pre-discharge conversations as if they understand what she’s saying. But a day later, or an hour later, they may have no memory that such conversations even took place! Sometimes, the psychological fallout happens AFTER we’re nicely settled back home. Until then, it can be an overwhelming blur of just putting one foot ahead of the other.
Written information about a new diagnosis can also be so useful for our families and friends. I love that story of your friend keeping your info in her wallet! That’s a true friend!! ❤️
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Exactly. . . I remember sitting there, hearing her words and smiling and nodding, oh really?
In retrospect it makes me wonder how on earth I could have reacted that way. And then driving home and it all hit. Of course I am extraordinarily fortunate that Dr. Soo (Esther) Kim is internationally known and her office is only about 90 minutes from my home.
It also is very helpful to not have to go over the explanation and details over and over again.
And yes, my friend who keeps the info in her wallet is a true friend.
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Yes, that “smiling and nodding” is so common in the freshly-diagnosed! I remember at one point while still in the Emergency Department listening to the cardiologist’s explanation of my diagnosis/treatment options/risks/benefits having the thought that although I could hear words coming out of his mouth, and I could see his lips moving, perhaps he was speaking Swahili – because I simply couldn’t quite grasp what he was telling me!! ❤️
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