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Stare down the monster of diabetes distress

In nearly 45 years with type 1 diabetes, I have experienced moments of frustration, fear, and exhaustion. I have also had moments of deep appreciation, inspiration, and strength.

My most distressing t1d experiences include seven near-death DKA-related hospitalizations, extreme hypoglycemia causing embarrassing professional moments and a 1-person car wreck,  and undiagnosed/misdiagnosed gastroparesis causing months-long absences from school, work, and life.  A cumulative effect of the low b/g related events led to a fear of hypoglycemia that led me to underestimate insulin needs far too many times.

I have been fortunate to have excellent endocrinologists, diabetes educators, and strong family support to help me through tough times.  Hybrid and closed-loop technologies (pump + CGM)  have helped me by providing real-time information. A critical turning point for me was reading  Dr. William Polonsky’s “Diabetes Burnout” (1999), which seemed to articulate my struggles in the early 2000s. (Note: I am thrilled to share that Dr. Polonsky has agreed to be featured in an upcoming “Diabetes Made Visible” newsletter.)

We are at an inflection point with diabetes. The technological advancements made over the last 30 years are awe-inspiring, and the advancements planned for the next 10, 20, and 30 years are even more exciting.  I am inspired to bring awareness (Make Diabetes Visible) and support diabetes self-management through animated education.

I don’t believe there is a magic bullet to cure diabetes distress, but I would like to share 3 suggestions about addressing the mindset.

  1. If you are feeling overwhelmed, take a proactive approach.  That might mean talking to your healthcare team, seeking a therapist, or joining peer groups.
  2. Embrace the concept that there is only data, not good data or bad data.   If your pre-meal CGM reading is 234, you know you may have an action to take. But the data is not “bad,” and you are not “bad” for having elevated blood sugar.
  3. No matter what challenges you have faced with diabetes, appreciate and remember the tremendous efforts you have put into place.