In the 2016 version of its annual Standards of Medical Care report, the American Diabetes Association made the following change: “In alignment with the ADA’s position that diabetes does not define people, the word ‘diabetic’ will no longer be used when referring to individuals with diabetes… The ADA will continue to use the term ‘diabetic’ as an adjective for complications related to diabetes (e.g., diabetic retinopathy).”
The ADA’s announcement got me thinking. Since my nine year old daughter, Bisi, was diagnosed three and a half years ago, I’ve never referred to her as diabetic, and I don’t like it when others do either. But I hadn’t stopped to examine why, or to think about whether this was just personal preference, or part of a larger aversion that others shared.
What is it that I don’t like? Along the same lines as the ADA’s statement, saying Bisi is diabetic makes it sound like that’s the thing that defines her, like that’s who she is. For this same reason, I think, you’d never say, “I am cancerous.” And you’re less likely to say I’m asthmatic or I’m hypertensive than I have asthma or high blood pressure. (I should add, though, that Bisi says she doesn’t care if people call her diabetic. So I guess that’s another question for myself: why does it bother me if it doesn’t bother her?)
The thing is, type 1 diabetes is a disease that will define you if you let it, because its long reach affects every aspect of your life—eating, sleeping, walking, thinking, feeling.
Not too long ago, Bisi and I dropped off a JDRF “bag of hope” for a little girl, only a year and a half, who had been diagnosed with type 1. As we talked, Bisi told the mother all the activities she does—gymnastics, acting, lacrosse, soccer, piano, skiing, slumber parties, and more. The mother told me how good this was to hear, and I realized that she feared her daughter wouldn’t be able to have a normal life where she got to do all the things kids do. I’d never thought about it that way before—it never occurred to us to let diabetes stop Bisi from anything she wanted to do, and it wouldn’t occur to Bisi either. But in this way of thinking, each activity is a small victory over the disease, a way of saying that the disease is not what defines you.
Along these same lines, just last night Bisi picked up a mailing from JDRF saying, “Tell us what type you are,” with 42 fill-in-the blanks. She quickly filled it out, and then proudly read me the results. I’ll quote it in full here, because I loved what she wrote. It made it clear that while diabetes is necessarily a pretty big part of her life, in her own mind there are so many other things that define her.
“I’m the awesome type; I’m the skiing type; I’m the cool type; I’m the animal type; I’m the funny type; I’m the 4th grade type; I’m the ? type; I’m the best type; I’m the food type; I’m the weirdo type; I’m the sports type; I’m the fun type; I’m the kind type; I’m the acting type; I’m the jiberish type; I’m the Omnipod type; I’m the CGM type; I’m the swimming type; I’m the dog type; I’m the horse type; I’m the turtle type; I’m the dolphin type; I’m the singing type; I’m the cooking type; I’m the friends type; I’m the Cinny [our dog] type; I’m the Hope [her fish] type; I’m the fish type; I’m the hugging type; I’m the snuggling type; I’m the loving type; I’m the creative type; I’m the original type; I’m the candy type; I’m the I hate Donald Trump type; I’m the chillaxing type; I’m the art type; I’m the reading type; I’m the elephant type; I’m the 1 type; I’m the Bisi type.
So no, don’t call Bisi diabetic. But if you want to say she’s a funny, creative, loving girl who loves animals and sports and also has diabetes, that’s fine.
