I was a brand new social worker fresh out of graduate school who found herself (luck?) working at one of the most prestigious teaching hospitals in the world. The medical center was known for its cancer research, but it had money to expand a little-known pediatric endocrinology clinic. The doctors wanted someone young who could relate to the teens and ‘tweens who’d been newly diagnosed with type 1 diabetes. They wanted someone who spoke the same language to help them cope.
I confess, at the time I did not know the difference between blood and blood glucose. Pumps, needles and monitors were familiar terms, but not in the context of diabetes. During my interviews I’d been honest about my lack of textbook knowledge and was told to leave that to the physicians. Other words were used to describe what my job entailed: I was to help the children grieve, deal, cope, adapt and accept their diagnosis.
“Okay,” I said, not knowing how to help these children do all those things, but thinking it sounded vaguely like what a social worker was supposed to do. I must have looked confused because one of the interviewers said: “You help them stay in control.”
Diabetes is sometimes referred to as a disease of control. You either have it (control) or you don’t. Your diabetes is either in control or out of control (often noted in black pen in the clinical chart as “OOC”). Coincidentally, adolescence, like diabetes, is all about control (hormones, blood sugar, take your pick). What the doctors (and the parents, I suppose) really wanted was someone who could kind of, gently, convince (control) patients into compliance. I knew, in a deep, gut, intuitive way—but had a hard time putting to words back then—this was never going to work.
Most kids were in touch with the bummerness of not being able to eat Milky Way bars for lunch or a donut for dinner. But because I didn’t know the difference between a bowl and a bolus, I offered little to no advice and instead asked a lot of questions (I was trying to learn something). In a fairly short time many of the kids moved beyond the sadness and segued pretty uneventfully into acceptance. The diagnosis empowered these kids to take control of what they could. They tested their own blood sugar, gave themselves insulin injections, shopped with Mom or Dad to buy the groceries and prepared their own lunches. I didn’t know enough to focus on the food, blood sugar, diet and exercise—I referred the kids back to the doctors as I was told to do.
I was young and inexperienced when I started that job but enlightened about one thing when I finally left it: Diabetic or not, no one is an expert about your life except you. No one can control you and, by proxy, no one can control your diabetes. The beauty of diabetes, as my young patients taught me, is that control is what you make it.
I would have loved your honesty when I was a teenager struggling with all those control issues! I’m sure you gave them more support than you realize because you’re right, no one is an expert on our bodies except us, and after 25 years, I still don’t feel like expert. Control is fleeting when it comes to type 1 diabetes.