Getting diabetes while living in Holland. Being diagnosed with type 1 diabetes when I was 17 and living with a host family in a foreign country was in some ways a blessing. Now, I’m not one to talk about diabetes improving my health or affecting my life for the better in general; it’s hard to get around that it’s a pain. But it was a blessing in that it allowed me to make the disease my own, as during my first six months of being diabetic, I didn’t have anyone around me who knew how much insulin I gave myself, when I tested, or what the test results were. In many ways, this has made it easier to fit diabetes into most aspects of my life on my own.
I never seemed to get along with endocrinologists. Perhaps because of the independence I developed around how I treated my diabetes, I found it tough when people asked a lot of questions. This was particularly true with doctors who would always ask how much insulin I gave myself at meals, which for me was generally a changing number. I’d normally respond: “it depends on high my sugar is, what I’m eating, if I plan to work out, if I’m trying to avoid low reactions…” or other lengthy responses. It seemed to confuse them, and over time I eventually just gave them what they were looking for: “5 units for breakfast and 8 for lunch.” At least it shortened the conversation.
What those last two blurbs have in common. Those are both examples of me not letting my diabetes be anyone else’s. I was always comfortable letting people know I’m diabetic, but never wanted to get into conversations about my diabetes. Not with my friends, my parents, doctors, or really anyone. Perhaps you’ve had my typical conversation: “Yes, I give myself shots, no it doesn’t really hurt, yes it’s ok if I eat cake, well I wouldn’t say having the disease is no big deal, but no you shouldn’t feel sorry for me…” next topic. The experience of being Type 1 seemed too wide-reaching to wrap it into a conversation about cake or needles.
A “medical narrative” in college. When I was a freshman in college, a senior in my dorm named Nico asked if he could write a medical narrative about my life as a diabetic for a class he was taking. He was a pretty soft-spoken guy who exuded kindness and listening skills the minute you meet him. So I said no problem. I sat down in his room and he said: “Tell me about life with diabetes.” I said, “I’m not sure, you gotta be a bit more specific.” He said, “What’s it like to have diabetes?” Which didn’t help specify much, but I started talking. I don’t remember what I said. But I kept talking. And talking. And talking. I ended up going for an hour without stopping.
So back to the title: why I’m writing a blog about diabetes. Whenever I think back to that medical narrative, I’m reminded that I have a lot to say about this disease. It’s one of those things that has some impact on almost everything I do. I think this is true for all of us. It’s always somewhere in the back of our minds. But for me, it just stays there, and when it comes up, I keep the conversations short. But when Nico was an audience that wanted to listen to the narrative, not to put me into the endocrinologist’s 65 carbs/13 = 5 units formula, or the “shouldn’t you not eat a cookie” basket, or the “where are your A1Cs” evaluations people in the diabetes world often ask, I could talk about it for ages. And I enjoyed that and felt I had interesting experiences to relate. Perhaps this will be a good place for discussing that narrative.