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7th Annual Diabetes Blog Week: May 19

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

After five years of living with my daughter’s diabetes, I find the quarterly visits to the endocrinologist to be unhelpful and even unpleasant. Life with T1D means that a person is under constant scrutiny. It’s self-imposed by necessity, and imposed by others by design. Our medical team is trying to help, I know. But, the thing is, when we meet for our quarterly appointment, the scrutiny never really results in any positive revelation. I don’t walk out feeling that I’ve learned something or gained a skill to make my efforts as an artificial pancreas more effective. Instead, I walk out feeling defeated. And I’m not even the one with diabetes. All the Ugly Things that my daughter is dealing with have occurred as a direct result of living under the T1D microscope.

Of all of the metrics used to measure my daughter’s health and the quality of her diabetes management, the use of the BMI is, by far, the very worst. We happen to visit an endocrinology practice that places (sorely misplaced) value on the “meaning” of the BMI. My daughter’s A1C has been consistently under 6.5% for two years now… no small feat when dealing with the onset of puberty. Yet, it’s the BMI that’s used as a primary yardstick for success. Because my daughter is dealing with Ugly Things, I told our CDE at our visit in January that the BMI would no longer be discussed in her presence. I intervened too late, though; the emotional damage was already done. We started receiving the message, way back in 2011, that her weight management was a critical component of her T1D care. It took a few years for that message to set its roots in her mind, and by the time I realized that had happened, the poison thoughts of body hatred were already deeply entrenched. I wish I knew then what I know now…

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