Telling Others About Your Child’s Diabetes
Figuring out who needs to know for safety’s sake—and who doesn’t
You and your health care team are responsible for the health of your child with diabetes. But who else needs to know? Basically, consider telling anyone who may be in a position to help your child manage his or her diabetes.
How you tell them, though, is important. Talking about diabetes can help dispel myths and keep your child safe. We talked to some experts to learn when and how you should share your family’s diabetes story.
Start immediately. Maureen Monaghan, PhD, is a psychologist at Children’s National Health System who specializes in kids with diabetes. She starts working with families right at diagnosis to make them comfortable talking about diabetes with others. “I am a firm believer that disclosing to friends and family and people that are close with you is important not just for health, but for social support and quality of life,” she says.
When Leighann Calentine’s daughter, Quinn, was diagnosed with type 1 diabetes at 3 years old, the family immediately started discussing how to talk about diabetes. In preschool, it was often part of Quinn’s self-introduction to new friends. “[She’d say,] ‘Hi, I’m Quinn. I have diabetes.’ I said she was loud and proud about it,” says Calentine. “We told her, ‘You don’t have to lead with that!’ But it’s just always been part of her identity.”
Identify adults who should know. These include school administrators, nurses, teachers, bus drivers, coaches, and perhaps school food service staff, friends’ parents, and employers of older children, Monaghan suggests. Even after disclosure, you’ll need to set up a 504 plan at your child’s school (it protects a child’s rights as a student with diabetes), but you should tell school personnel before the 504 is complete. Depending on your child’s age, you might tell these other adults about your child’s diabetes, or your child might tell them. Or it might be a blend of both. “Especially with high schoolers … medical information should come from parents, but talking with [adults about diabetes in general], that can come from kids,” Monaghan says. Older children may not want to tell all acquaintances, and that’s OK.
Keep it simple. For kids with type 1 diabetes, Monaghan helps them develop a script. A quick description can be enough to help friends, classmates, and adults understand a child’s needs: “I was diagnosed with type 1 diabetes. This means my pancreas is no longer producing insulin. We don’t know what caused it. I have to take insulin on a daily basis to match my food. This is something I have to pay attention to every day.” Kids with type 2 diabetes often have to fight negative stereotypes blaming them for their condition. Monaghan says she works to help kids explain why those stereotypes are wrong and hurtful. Her team focuses on helping kids with either type 1 or type 2 understand what contributes to diabetes, as well as positive lifestyle changes they can make to be healthier. Sharing those steps can help dispel myths and stereotypes, she says.
Be cautious about sharing online. Finding a community of other kids with diabetes is important. American Diabetes Association Diabetes Camps and Family Link programs are two great places to start. Kids can find online communities (such as those at diabetes.org/families) where they can be in touch with kids who are going through the same things. But as with all online interaction, you should monitor your child’s use and make sure he or she understands that an online “footprint” is forever. Cherise Shockley is founder and CEO of the Diabetes Community Advocacy Foundation and a pioneer in the diabetes online community. She’s shared a lot of her experiences with latent autoimmune diabetes in adults (LADA) since being diagnosed in 2004. But she also knows that communicating online means anyone can read along. “What you put on the Internet stays on the Internet,” she says. A child may not consider the potential consequences of being too open about diabetes. For example, your child may not realize now that someday prospective employers and people he or she dates will be able to see disease information online.
Balance your needs and those of your child. Social media can provide a real support system for parents who are dealing with a child’s diagnosis. Reading blogs about how other parents cope can provide comfort, Shockley says. “It’s OK to lurk,” she adds, describing the practice of just reading and not responding to posts. “And [if] you come out of lurking and come onto that platform—Facebook, Twitter, YouTube, whatever—you’ll find people who will welcome you with open arms.” But what you post online is there forever, too, and will follow your child through school, job searching, and beyond. So if you wouldn’t want something to come up at a job interview, don’t put it online. Shockley notes that many diabetes parent bloggers use nicknames for their children and avoid posting photos so their identities are not revealed.
Calentine calls her daughter “Q” on the blog and says she tries “to share without over-sharing.” And as her daughter has gotten older, Calentine has asked permission to write about some stories or post certain pictures on her blog, d-mom.com.
As in any situation, think about what people need to know and what will make you feel better if you share it, says Monaghan. “Diabetes is going to be part of your life for better or worse the rest of your life, the same way kids might be baseball players, or into chemistry, or interested in dance,” she says. “It’s important to integrate it into your life.”
Finding Support Online
For more information on diabetes care at school and 504 plans, visit diabetes.org/safeatschool.
The American Diabetes Association’s online community has message boards for parents and kids with diabetes. Join the conversation at community.diabetes.org.
The Diabetes Community Advocacy Foundation’s online radio show, DSMA Live, now has a spinoff for families with diabetes. You can listen to DSMA Live ’Rents at diabetescaf.org.