My friend and fellow patient advocate, Casey Quinlan, recently wrote an article about preparing to move from minor patient to adult patient. It’s a great article with a lot of good steps to follow in order to go from pediatric specialists to adult specialists, keeping track of and taking responsibility for your records, and planning so all of that takes place deliberately and not bass akward, as my grandpa would have said.
But as I was reading it, my first thought was that, though I was the target audience, my transition was a lot messier than steps and plans could handle.
In some ways, my childhood ended with my first brush with death at six years old, and I realized that the world wasn’t necessarily a safe place. I knew way too much for a six-year-old, but there was no going back, and when I was diagnosed with diabetes at 14, I found myself in this weird place where the doctor wouldn’t talk to me on a level because my physical age didn’t match my emotional age. The first endocrinologist was the worst doctor I have ever had. Even though I lived in the second largest city in my midwestern state, there was no pediatric endocrinologist. There was a pediatrician who treated diabetics. He would send me out of the room to talk treatment with my parents, and he “treated” me right into an eating disorder and six years of noncompliance.
During that period, I averaged 40 days out of school every year. I missed out on a lot of teenaged social development. I had a few friends, and I was good enough in school to do well even that sick, but that was all I could do. It was enough to get me to college, so I didn’t really think about it. Because who thinks about their own social development in their late teens? But I was in this place where I was about 20 years too old on the medical side and 10 years behind my peers on social development.
The first year of college was a disaster. I wasn’t ready to be away from my family support and I did so poorly that first semester, the college invited me not to return. I took it personally and had my best semester right after that. I was definitely not an adult yet.
The summer after freshman year, I started developing serious complications, and I was scared straight. The Joslin Clinic helped put me on the right track, but after a psychological evaluation, they concluded that my issues were more appropriately treated by a pediatric endocrinologist. They were right, and I saw her until I graduated at 23.
It was only after graduation and another visit to Joslin that I decided it was time to grow up and move to a more adult disposition. College had been a soft environment. There would be no clinic with staff who all knew my name wherever I went next. But even then, it had to wait. My mom was diagnosed with terminal cancer and my transition got rolled up into a more general change around what my identity was without her.
For those of us who have had diagnoses as children, the transition from child to adult is inevitable, but it doesn’t always happen cleanly, or how or when we think it will. Though I have caught up to my medical age, there are times I still feel that I am 10 years behind my peers on social development. I suspect this situation was the root of my contrarian streak. Casey said, “ya THINK?”, when I wondered this out loud. Whenever the transition happens for you or your child, do follow her steps, but provide for contingencies, as well.