Henry had only been diagnosed with diabetes for a few weeks when I found myself lurking in the middle of an angry debate on a social media about whether or not diabetes was a disease or condition. People who thought diabetes was a condition explained that being labeled with a disease was limiting, and the label had negatively impacted the way others saw them. The other side maintained that diabetes was certainly a disease because it required medication and daily intervention to stay alive and healthy. Furthermore, they argued that if diabetes were seen as a condition, then research and funding would wane because people would not understand how serious type 1 is.
As the parent of a recently diagnosed three-year-old, scared of every number on the meter, dreading each insulin shot, terrified of the possible side effects, of course I considered T1D a disease.
Now, three years later, I don’t want a disease to label my child. I don’t want him to see himself as “diseased.” Yet, every few months, I read of people, including toddlers, who pass away from type 1, and in moments like this, never is it more clear to me that type 1 is a disease.
For the past two years, we’ve attended the Friends for Life Conference in Orlando, FL. One of the vendors gave Henry a copy of the Medikidz comic about type 1 diabetes, which Henry loves to read at bedtime.
A few nights ago, Henry came out of his room with the book in hand. He was very excited, and this is the conversation we had.
Henry: Mama! Look, did you know that there are other Medikidz books? There’s one on lung cancer, chronic pain, and melanoma! Can I get these other three books for Christmas? Can I put them on my Christmas list?
Me: Yeah, I guess so. Is that something you really want?
Henry: Yes! I can learn about lung cancer. Is it like diabetes, where your beta cells get attacked?
Me: No, cancer is different. It’s when certain cells don’t grow the way they’re supposed to.
(long silence, Henry regards the back of the book)
Henry: Hey, this book says diabetes is a disease! Is diabetes a disease?
Me: Well, some people say yes, and some people say no.
Henry: So, is diabetes a disease?
Me: I think you’re the person who gets to decide that. So, what do you think?
Henry: I think diabetes is just diabetes.