True Diagnosis: Acceptance and Behavior Change

True DiagnosisAt the Hx Refactored conference a few weeks ago, Kate Brigham from Patients Like Me described the journey that a person takes when they experience a serious illness. The stages of the journey, which were mostly condition-agnostic, went from first experiencing symptoms, to searching for information and treatment, to ultimately accepting and living with the condition in a “new normal.” One important step Brigham pointed out was getting a diagnosis you believe. The wording here was deliberate, as many patients receive multiple incorrect diagnoses before arriving at the true one. Sometimes they know they’ve been misdiagnosed; other times, it’s a frustrating experience trying therapies that are expected to work but don’t.

Fast forward a week, and I found myself conducting mini-focus groups with people who have diabetes as part of a customer collaboration. Two of the participants illustrated for me first-hand the importance of a diagnosis you believe, and the potentially harmful health consequences of not believing the diagnosis.

Mike and George both have Type 2 diabetes. While both had a family history, both were also slender and physically active. Both men made sure to point out that they were not typical diabetics. Mike even went so far as to say he doesn’t like shopping in the diabetes section at the drugstore because he feels it outs him as a diabetic when otherwise people wouldn’t suspect based on his appearance.

Due in part to their weight not fitting the typical diabetic profile, it took both Mike and George years to accept that they really had diabetes.

George said that when he first learned he had diabetes, the diagnosis did not “ring true.” He didn’t believe it. As a result, he said, “I managed diabetes poorly for a few years.”

Mike also didn’t believe his diagnosis at first. Although he was constantly thirsty, he wasn’t overweight and didn’t fit what he saw as the diabetes profile. He said he didn’t take care of himself in the years immediately following the diagnosis, and only took his diabetes seriously when a doctor finally told him he was putting his life in danger.

In both cases, the men intellectually understood what diabetes was and how to address it. Both of them have good levels of health literacy, access to health care resources, and a general interest in self-care. They also both felt that diabetes didn’t match their own situation. As a result of not feeling diabetes to be a true diagnosis, they mismanaged their own health for years after first being diagnosed.

There is a challenge here for health care providers and coaches. When we work with people who either don’t fit the typical profile for a condition or for some other reason aren’t ready to accept that they have a diagnosis, how can we help them arrive at the place of feeling the true diagnosis? And if we can’t get them there yet, how do we help them to make some of the necessary lifestyle changes anyway?

2 thoughts on “True Diagnosis: Acceptance and Behavior Change”

  1. Great post!

    Since I’ve moved to a nonprofit that focuses on rare diseases, I’ve heard many patient stories of it taking years to get to diagnoses.

    (I also heard stories like that 1st hand when I worked for the National Multiple Sclerosis Society.)

    1. Thanks! Yeah, MS is a big one. I’ve done some work in that area and people can get really frustrated both by the time to diagnosis, and to the realities of having an “invisible” disability that other people may not understand. It’s awesome that you get to work on rare diseases!

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