by Carolyn Thomas ♥ @HeartSisters
Unlike the professionals I know in the field of cardiology (the ones who decided they really wanted to spend many, many years of their lives studying All Things Cardiac), people living with heart disease are thrust unwillingly into an intensive overnight learning immersion program. We go from being utterly ignorant to, little by little, becoming increasingly familiar with even the most complex information on the subject of our own diagnosis. As one of my Heart Sisters readers told me she had astutely reminded her physician: “This is your career, but it’s my life.”
And this seems to be true no matter what the diagnosis. I know that, had I been diagnosed with lupus instead of heart disease, I’d be blogging and speaking and writing about lupus right now.
When I attended the WomenHeart Science & Leadership Symposium for Women With Heart Disease in 2008, it was an indescribably moving experience for me to spend five days of this training at Mayo Clinic with 45 other women who chatted easily about their ejection fractions or troponins, CABG or SCAD, V-Tach or AFib.(1) Until then, I’d never met another person like me (a female survivor of the widowmaker heart attack, along with a subsequent diagnosis of inoperable coronary microvascular disease). I’d been the only woman in my cardiac rehabilitation classes, and the youngest by at least two decades. At that time, nobody I knew personally was living with what I had.
My Mayo heart sisters and I weren’t experts on our diagnoses (not yet, anyway), and indeed we had to go through several distinct learning stages that were launched only after surviving our own initial experiences with heart disease.
In other words, we knew about how our hearts worked (or didn’t work) because of what’s known as experiential learning.
If you’re reading this because you have been freshly diagnosed with cardiovascular disease, you may already be navigating the five identified stages of this learning, as described by researcher Dr. Patricia Benner.(2) Her study on experiential learning is based on the pioneering research of the Dreyfus brothers at Berkeley, described in the book, “Mind Over Machine: The Power of Human Intuition and Expertise in the Era of the Computer.”(3)
What this means is that, whether you’re a student nurse, a chess player, an airline pilot or a new heart patient, you’ll learn as much (some even insist more) about what you need to know from your own day-to-day lived experience as you will from formal structured lessons, textbooks or patient information brochures.
Here’s how these five stages described by Dr. Benner can look to the heart patient:
1. The Novice Patient – wants to be given a manual, told what to do, with no decisions required
Newly diagnosed novice heart patients have had no lived experience with this terrifying situation. So novices are taught basic rules to help them adapt (for example, how to correctly take your nitro to relieve the chest pain of angina).
These rules may also include doctors’ recommendations about heart-healthy eating, lifestyle improvements, or how to stop smoking. The patient discovers online resources and becomes interested in learning more about the specific diagnosis and treatments as part of the sense-making stage of their progress. The rule-governed behaviour typical of the overwhelmed novice Patient is extremely limited and inflexible. “Just tell me what I need to do…”
2. The Advanced Beginner Patient – needs a bit of freedom, but may be unable to quickly describe which parts are more important than others
Advanced beginner heart patients are those who have coped with enough real situations so far to notice the “recurring meaningful situational components” of their diagnosis. If they are very, very lucky, they may be among the minority of heart patients referred by their cardiologists to a life-saving cardiac rehabilitation program, for example, where they carefully follow the scheduled exercise plan. By now, they are able to relax and trust their own bodies far more than at the beginning. They start to formulate their own guidelines to influence day-to-day decisions based on personal experience.
3. The Competent Patient – wants the ability to make plans, create routines and choose among activities
Competence develops when heart patients begin to be consciously aware of actions in terms of long-range goals or plans. The competent heart patient has spent considerable time figuring out what they can or cannot do by now, and how this new diagnosis may affect day-to-day life, and may also have a growing feeling of being able to cope with and manage the many aspects of heart disease so far. But this person may not yet have enough experience to recognize the situation in terms of an overall picture.
4. The Proficient Patient – the more freedom you offer, the more you expect, and the more you’ll get
The proficient heart patient perceives situations as wholes rather than in terms of chopped up parts. These heart patients can now understand their situation as a whole because they perceive its meaning in terms of longterm goals. They learn from experience what typical outcomes to expect in a given situation and how plans need to be modified in response to – or even to prevent – these outcomes.
5. The Expert Patient – can write the manual, but doesn’t necessarily follow it
The expert chess master, when asked why he or she made a particularly masterful move, will just say, “Because it felt right.” The expert heart patient no longer relies strictly on an abstract treatment guideline to connect understanding to appropriate action. By this stage, the expert patient has an intuitive grasp of each situation and can zero in on the accurate region of the problem without wasteful consideration of a large range of unfruitful, alternative diagnoses and solutions. For example, they’re beginning to recognize the subtle difference between “normal” chest pain of angina that just requires a spray of nitroglycerin compared to the kind that requires an immediate 911 call. If mistaken, their way out of a wrong grasp of the problem is by using learned problem solving skills.
As I like to tell my women’s heart health presentation audiences, your only job as a new patient is to now become the world expert in your own particular diagnosis.
♥
1. Visit my Heart Sisters patient-friendly, jargon-free glossary of hundreds of definitions of confusing cardiovascular terminology.
2. P. Benner, “From Novice to Expert,” American Journal of Nursing, 1982. (3), 402-407.
3. Stuart E. Dreyfus, Hubert L. Dreyfus, in Chapter 1 of “Mind Over Machine: The Power of Human Intuition and Expertise in the Era of the Computer,” (New York, Free Press, 1986).
Q: Where on you on this 5-stage journey to becoming an Expert Patient?
See also:
When you know more than your doctors about your diagnosis
Six personality coping patterns that influence how you handle heart disease
Why hearing the diagnosis hurts worse than the heart attack
How we adapt after a heart attack may depend on what we believe this diagnosis means
Which one’s right? Eight ways that patients and families can view heart disease
Denial and its deadly role in surviving a heart attack
The new country called heart disease
.
This post was also picked up as a guest post on The Mighty
Heart Sisters 
I’m a CFS expert. I’m an expert on physics, homeschooling, and getting kids into top colleges when you homeschool. The list of subjects I would feel perfectly happy weighing in on (if I had the energy) is very long.
I didn’t plan to become an expert on stents, statins, BP drugs, and platelet therapy. I’m getting to the advanced stage rather too rapidly for comfort.
Because my brain isn’t capable of writing fiction, but can read – and be appalled at – some of the papers. I’m writing plenty of non-fiction – journaling – so I have already over 30,000 words on me, the meds, and the experience. Since Feb. 22, 2017, the day I came home from the hospital finally. Plus about 10K worth of blog posts.
I’m sure the doctors want me to shut up and go back to writing fiction – but I keep telling them I CAN’T.
It lowers the stress immensely to write it all down.
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Hi Alicia – sadly, none of us ever planned to need expertise in heart disease! You are in very early days yet, so your writing is indeed therapeutic, helping to move you towards your goal of sense-making. Trouble is, much of this new life makes no sense now (my doctor once described my cardiac misdiagnosis and recovery as being like a move to a foreign country, for example) and in fact, this may never make sense to our absolute satisfaction. Writing about it can help process this new reality until we’re able to finally deal with it as just that – reality.
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My purpose is to make what sense of it I can – and then, do whatever is necessary while putting it completely behind me most of the time. I do that with the walking and the CFS.
If I spent my time on them, I’d never do anything else.
I’m rather proud that, even though it took me 15 years, I got an incredibly complex literary novel published in late 2015, Book 1 of a trilogy. The sooner I get back to writing fiction – for which I need a brain – the sooner I can ignore the new ball of wax I got lobbed.
My reality is inside my head; the outside world is not kind to me.
I thought I would have some time – new stents, better blood flow – and instead I’m losing day after day after day to stupid side effects.
I don’t ask ‘why me?’, but I’m getting awfully tired of it all.
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Originally, I read this article out of interest in my sister-in-law’s new cardiac diagnosis. I hope she finds it as helpful and insightful as I did. I quickly realized that the “stages of patienthood” also refer to me, as a five year (so far) metastatic breast cancer patient. Thank you for sharing this thoughtful work.
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Thank YOU Barbara for taking the time to share your unique perspective. I have observed for years that whenever I write about the heart patient’s experience, people living with other serious diagnoses invariably chime in too. Maybe that’s why I have a surprisingly large number of subscribers who are breast cancer patients! BTW, I loved your “Life-Living” essay* – and I agree with that young woman at the beach who told you “You are amazing!” I also loved that line: “It was a long day at the cancer center Monday, after a long day at the beach Sunday afternoon, trying to live.”
“Trying to live” – such a profoundly important part of just putting one foot in front of the other for so many of us. Thanks again!
* With Barbara’s kind permission, I reposted her Life-Living essay here.
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How timely this posting is, Carolyn. I’ve just been diagnosed with a thoracic artery aneurysm. Surgery will be sometime in the next 3 months or so.
I’m definitely in Stage 1 of the learning experience however, probably from reading your blog, I’m also doing some of the work listed in stages 2 and 3. For example, I’m not asking someone/thing to “just tell me what to do”. I’m using online research to try to figure out what will be best for me while I wait and how I can best cope afterwards.
Thanks to you, I’m probably more aware than most that the experiential learning is going to be unique to me and the most important part of my journey. One thing I do know, even though it goes against my self-sufficient nature, is that I’m going to push for all the help I can get, both post-op and in the future after that!
When I started following you, I wasn’t a survivor of adult heart disease, but the previous generation of women in my family all had it and I had a heart defect at birth that self-healed. I had learned that these birth defects can come back to affect your cardiovascular system as an adult; in different ways from the original problem. So I felt fortunate when I discovered your work on women’s heart health because I wanted to be somewhat prepared if an issue arose.
Thank you for helping with that prep work.
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Hello Deborah – I’m so sorry to hear of your diagnosis, but I’m guessing by this 3-month timeline that your docs are not considering this to be an emergency diagnosis (although the word “aneurysm” always sounds like it should be an emergency!) Becoming more and more informed will help you tolerate the waiting. Meanwhile, I’m going to go look this up!! Please let me know how things go for you, okay? Thanks for letting me know – best of luck…
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Whoops – that’s thoracic aorta – not artery. Also known as a TAA to the cogniscenti! Guess I need to know the proper terms. Definitely at square one.
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Ha! I guess that first stage includes getting the terminology memorized, right? You’ll be a whiz at all of this by the time your surgery date arrives! I’ve been doing some reading about this TAA diagnosis since you first shared it this morning: what I found out is that this condition is quite rare (6-10 people per 100,000), can be linked to family history, and treatment can vary – depending on the size of the aneurysm – from watchful waiting to emergency surgery. Hope yours is the most uneventful kind, Deborah!
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I would like to reply maybe I can help. I’ve suffered for 13 years now, 2 stents 15 heart catheterizations and finally double bypass surgery. I’m a small framed male, was always active working construction, good amount of exercise but was a smoker.
1st heart attack at 34 years old. In between surgery before heart attacks started, went to ER several times with classic symptoms – enzymes showed up in blood, EKG abnormal, signs were there but heart catheterization showed no significant blockage.
Finally a few years later during a heart Cath, they caught what was happening and filmed it. It is rare but is called Prinzmetal Angina. They’d never seen it or had it happen on film. What it is, your arteries will spasm, close off, causing heart attacks. You don’t have to have blockages for this to happen.
I still suffer from this. Ironically enough had attack this morning. I take a lot of nitro. I think you should look into it. It’s a terrible thing like dying over and over. I’m quite used to it, all signs are there, chest pain, bad pain in left elbow, nausea, sweating.
I hope I was a little helpful, it’s a bad thing to have and hard to diagnose. Best wishes to you, hope you feel better feel free to ask any more questions. Stress is a definite cause of them to spasm, again the name is PRINZMETAL ANGINA. I am curious if you have this, I don’t know anybody else that has this.
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Thanks for sharing your experience Mark. In Deborah’s case, her diagnosis has been confirmed as thoracic aortic aneurysm. But you are so right, spasm disorders like Prinzmetal’s are often misdiagnosed. I’ve written more about this condition here and here. BTW, I hope by now you’re an ex-smoker! Best of luck to you…
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Another great blog post. What I like about it is not necessarily that I agree with the content, but it starts a good discussion. Where are you on the learning curve? Does this accurately describe your experience? Whether you agree or disagree is not the point. What the point is – are you learning from your experience? Knowing what you know now do you ask different questions? Do you take that knowledge and apply it as you continue you on your journey with a chronic illness? Knowledge truly is power.
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Good points. Those are the same reasons I too like Dr. Benner’s work on experiential learning among patients (or, in your case, among family caregivers too). Another useful thing happens when we consider these five predictable stages (not that we all go through them in order, or we might even skip a stage or two entirely). Back when I was in Stage 1, I never could have believed that I wouldn’t always feel overwhelmed and scared, that some day I could have a pretty serious angina attack, for example (pain so severe that it would send most people rushing straight to the ER) but I would actually be able to carefully assess the nature of the pain and decide for myself what the most prudent step to take might be. That kind of thinking was absolutely impossible for me back in Stage 1. It’s not that scary things don’t still happen, but as you say – knowledge is power and so the more informed and prepared I am, the more steady I’m able to feel over time. Thanks for weighing in here, Donald!
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