What’s in a Name

I have this fantasy in my head: Next time someone asks my daughter, Noelle, about why she is pricking her finger or wearing an insulin pump, she will reply, “I have organ failure.”

Putting aside the fact that I would much rather have other fantasies in my head, I am embracing this one since a recent visit to the psychologist in Noelle’s pediatric endocrinologist’s office. The psychologist is just one other resource offered by the office to address the complete needs of a child with type 1 diabetes; last month we visited the nutritionist to learn that fast food really isn’t all that good for you. I know, shocking…

Visiting the nutritionist was a no-brainer; the psychologist, not so much. I have generally positive feelings about the benefits of therapy, but as someone who as a child was dragged to family therapy to address the needs of others, I did not want to see my own daughter feel the helplessness I felt in that situation. My husband is not a big fan of therapy at all, but he agreed to meet the doctor to discuss a couple problematic issues we have noticed in Noelle in regards to her diabetes.

One of those issues is her difficulty explaining her diabetes to children who see her testing her blood sugar or glimpse her pump site on her arm or leg and are naturally curious.

The doctor suggested a response that he said another child with diabetes had told him worked for him: Simply say, “I have diabetes. Go ask your parents what that means.” At the time he suggested this, we nodded and said that sounded like it could work.

But I stewed about it the whole way back to Williamstown from Worcester. Even if Noelle were to say that to a child at the park, and that child were to go ask her parents, what are the odds those parents would know that type 1 diabetes is an autoimmune disorder with no known cause that completely tears apart a family’s life and turns a normal childhood into a finger-sticking, pump-inserting, ketone-testing, sugar-ingesting, tears-inducing, anxiety-causing mess? Instead, I picture most adults saying something falsely soothing like, “You get diabetes when you eat too much sugar, so no more candy today,” and deep down “tsking” the parents that let their child eat so much junk she got diabetes. It’s just that most people have no idea what type 1 diabetes is until it roars into their life and sticks around like an unwanted house guest that just. Won’t. Leave.

But I liked the idea of equipping Noelle with a standard line she can use when she does not feel comfortable talking about her diabetes. And thus grew the idea of calling it “organ failure,” which, after all, is what it is. Her pancreas is an organ in her body that has failed. It’s dead. Kaput.

So picture this instead: Noelle says to the little girl in park: “I have an organ in my body that doesn’t work so I have to do some extra things to keep my body healthy. Go ask her your parents.” Picture the little girl running over to her mom and saying, “That girl has an organ in her body that doesn’t work and she has to have a needle in her leg ALL THE TIME!” The mom would look over with a sad, sympathetic look on her face, maybe even come over to introduce herself, apologize for her child’s nosiness, and act supportive and caring without any judgment in her voice. After all, who could judge a parent for having a child whose organ failed? Now THAT sounds like a tears-inducing, anxiety-causing mess that no parent could possibly have caused.

There are a lot of parents of kids with type 1 diabetes who want to remove the word “diabetes” from their children’s lives, as so many people associate diabetes with something more deliberate and caused by poor lifestyle choices. The term “Autoimmune Beta Cell Apoptosis” has been suggested. That will roll off Noelle’s tongue at the playground for sure.

What is Type 1 Diabetes: Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it. [Source: JDRF]

ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. In Just My Type Rebecca shares her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.