Q: Our newly diagnosed 11-year-old has begged us not to tell anyone beyond our immediate family and her teacher. How do we explain to her that it's helpful for those around her to know about her diabetes? How can she introduce the topic when meeting new people?
A: Your daughter's reaction to her diagnosis is entirely normal for a child in this age group. But what's important to remember -- and this can apply to many more issues than just diabetes -- is that the growing pangs of adolescence should never overshadow a child's safety.
To keep your daughter's trust while still giving her a gentle nudge in the right direction, talk to her about why she feels the way she does. Validate her feelings and desire to keep things private, but also make it clear that it's a good idea to let people know she has type 1 diabetes, not only for her own safety in case she ever needs help, but also because diabetes is nothing to be ashamed of!
Does absolutely everyone need to know about your daughter's diabetes? No. But let's start with the people who do: anyone in your child's inner circle and day-to-day life who can be of help if she experiences low blood sugar and requires assistance. These people include friends, family, classmates, teammates, teachers and coaches. (For examples of how kids can get past their fears of opening up to friends and coaches, she might be interested in checking out Up for the Challenge or Power Forward, two novels in a series about tweens with type 1 diabetes. Ask your healthcare provider for copies.)
Outside those in the "need to know" category, it really is up to your daughter to make the decision about whether or not to share information about her diabetes. She needs to understand, however, that she should never try to hide the fact that she has type 1. If she's going to the mall with some of her good friends and a few new acquaintances, help her prepare a few "sound bites" to quickly explain what she's doing ("checking my blood sugar") and why she's doing it ("to see how much insulin I have to take").
Often, that's all other kids want to know. But sometimes it leads to more questions or comments like, "My grandfather has diabetes!" Either way, your daughter has the option of answering their questions in depth or saying something brief like, "There are two kinds of diabetes, and your grandfather probably has the other kind."
If you continue to meet resistance from your daughter on matters like telling her soccer coach, it's a good idea to make an appointment with the family therapist or social worker on your child's healthcare team to get to the bottom of what's really going on. Not wanting to tell others may be rooted in her own sense of not being the same person anymore—and not feeling too good about this. Is she mourning the loss of who she used to be? For one day, at least, leave behind the tension of who to tell and who not to tell—and go have fun! Eat out at your family's favorite restaurant, go to the movies, take a family hike, or hang around the house, just like always. Given time and understanding, when she's more secure about her own sense of self, your daughter's worries over how her type 1 is perceived will likely diminish, if not completely disappear.
-- Jean Betschart Roemer, MN, MSN, CRNP, CPNP, CDE, is a pediatric nurse practitioner and certified diabetes educator in the Department of Endocrinology, Diabetes and Metabolism at Children's Hospital of Pittsburgh.
Disclaimer: The information in these articles is not intended as medical advice. Families should check with their healthcare professionals regarding individual care.