Being a Team Captain: Raegan Perkins’ Story

My name is Raegan Perkins, and 16 years ago I was diagnosed with type 1 diabetes—a month before my 13^th birthday. It changed my life and everyone’s life around me, to say the least. This is a story about how my mom helped me become my diabetes team captain at endocrinologist appointments.

I did not like my diabetes being a “main topic,” preferring it to be a footnote about my life. My mom had to figure out how to work with me to improve how and when I discussed my diabetes, put her own mind at ease, and develop me into the successful, independent adult I wanted to become.

Her starting point was getting me to take more of a lead at endo appointments. I remember her having the frustrating conversations with me about my next appointment. She would politely probe, asking what concerns I wanted to bring up to the doctor, how I thought my A1C or numbers would be, whether I had been writing them down (I usually waited until 2-3 days before my visits to fill in a month of a logbook), did I feel like my insulin rates were working, etc.

At first, we would have these conversations so she could bring them up at appointments and everything would be discussed with me in the room. Going into high school, she said it was time for me to lead the conversations, and for her to start taking a “back seat.” Before I left for college, she would sit in the waiting room, letting me speak with the doctor alone. We continued this through the first two years of college until both she and I were comfortable.

Key things from my perspective: First, my mom would regularly say “it’s you going through this. I would take it from you if I could, but I can’t.” This is very true: no one knows my diabetes better than me, therefore I needed my own voice in endo appointments. Yet I always know she is there to support me. Second, she and my endo took things at my speed, pushing me just enough. They cultivated a sense of independence that really helped me in diabetes management and life. Finally, there was an incremental—not sudden—shift from my mom being my diabetes team captain to me. It was done progressively, with supervision and support from everyone involved.