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The 5 Stages of Learning to Become an Expert in Your Chronic Illness

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Unlike the professionals I know in the field of cardiology (the ones who decided they really wanted to spend many years of their lives studying all things cardiac), people living with a chronic and progressive illness like disease are thrust unwillingly into an intensive, overnight, learning immersion program. We go from being utterly ignorant to becoming increasingly familiar, little by little, with even the most complex information on the subject of our own diagnosis.

As one of my Heart Sisters blog 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 had I been diagnosed with lupus instead of heart disease, I’d be blogging, 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 Mayo Clinic training with 45 other women who chatted easily about living with their diagnoses.

Until then, I’d never met another person like me — a female survivor of the widow maker 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 Clinic heart sisters and I weren’t experts on our diagnoses (not yet, anyway), and didn’t know at the time we had to go through several distinct learning stages that are 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 a chronic illness, you may already be navigating the five identified stages of this learning, as described by researcher Dr. Patricia Benner. 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.”

What this means is that, whether you’re a student nurse, a chess player, an airline pilot or a freshly-diagnosed patient, you’ll learn as much (some insist even 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 a heart patient:

1. The Novice Patient — wants to be given a manual, told what to do, with no decisions required.

Newly diagnosed 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 nitroglycerin meds 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 behavior 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 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 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 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. They 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 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 long-term 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 patient no longer relies strictly on an abstract treatment guideline to connect understanding to appropriate action. By this stage, the heart patient has an intuitive grasp of each situation and can zero-in on the accurate region of the problem without wasteful worry over 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 nitro, 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 now like to tell my women’s heart health presentation, your only job as a new patient is to now become the world expert in your own particular diagnosis.

P. Benner, “From Novice to Expert,” American Journal of Nursing, 1982. (3), 402-407.

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).
Carolyn Thomas is the author of “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, 2017).

Getty image by FotoDuets

Originally published: November 22, 2019
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