Having type 1 diabetes can make a child feel like the odd one out -- the only one who has to disappear off to the nurse before lunch or carry a mysterious kit around everywhere. Demystifying diabetes for their friends can help keep a stigma from forming around these activities. To that end, we quizzed kids of various ages on the best ways they’ve found to tell their friends about their diagnosis, discuss testing and dosing, and move past any embarrassment about type 1. Darnyl R. Katzinger, Psy.D., a pediatric psychologist in private practice in Atlanta specializing in children with diabetes and other medical conditions, weighs in on why each strategy works.
“I was diagnosed with type 1 in the summer before fifth grade. On the first day of school that year, I brought my mom with me, and we both gave a speech about my diagnosis and had a question-and-answer session afterwards. It was really great for everyone to find out at the same time. I felt better knowing it wasn’t a secret.”
--Lucy, age 11, Montrose, Calif.
Katzinger says: “While the process of adjustment is different depending on the age and developmental stage of the child, openness with peers tends to be the best route toward acceptance. It also can help to remove the stigma children often feel as a result of having been diagnosed with a chronic illness. Kids (and parents) should prepare for lots of questions, as most children will have very little knowledge about type 1 diabetes.”
Editor’s note: Not sure what to say at a class presentation? Start off by reading a children’s book about diabetes like Coco Goes Back to School, published by Disney and Lilly Diabetes and available free from endocrinology healthcare providers. Find more info here.
Show and Tell
“Kids in my class were really scared when they heard I had diabetes in kindergarten. They didn’t understand why I had to get shots. My mom brought a stuffed animal to the classroom to show how injections work. No one was scared of my diabetes after that.”
--Emily, age 7, Tulsa, Okla.
Katzinger says: “Some hospitals provide each newly diagnosed child a care package from JDRF that includes a teddy bear and a book featuring a boy with diabetes who receives the same teddy bear to help him through the loneliness and isolation he feels. They suggest taking the book and the bear to school to demonstrate diabetes care. Teachers are often very receptive to this idea and happy to assist in any way they can to facilitate the process of adjustment.”
Game the System
“When I started middle school, my routine included testing my blood sugar before snack time and lunch. I’m a huge sports fan, so one day I decided to create a game called ‘Fantasy Diabetes,’ modeled after Fantasy Football. Fourteen of my friends signed up to play. Twice a week, before snack, they would take a guess as to what my blood sugar would be. We recorded guesses and awarded points based on how close to the actual number they were. This allowed me to educate my friends about type 1 diabetes.”
--Justin, age 12, Greenville, S.C.
Katzinger says: “Every child finds his own unique way of coping with having been diagnosed with a chronic illness. One of my patients decided she didn’t like that the word ‘diabetes’ begins with ‘die,’ so she had t-shirts and bracelets made that say ‘I have livabetes.’ Creative solutions like these can be very effective.”
“The thing that helped me most was just meeting other kids with type 1 and hearing how they dealt with it. After my diagnosis at age 11, my mom got me around as many kids with type 1 as she could find. Meeting people like me made me feel like less of a freak and more proud of who I was.”
--Hayden, age 14, Orlando, Fla.
Katzinger says: “The most effective coping strategy I have seen utilized across all ages has been support -- not only from family and friends, but from other children with type 1 diabetes. Living with a chronic illness can feel isolating and overwhelming, and despite the reassurance they receive from loved ones, children often feel as if ‘no one gets it.’ This is why knowing and befriending others with similar experiences can be helpful. You can connect with other families at events like the annual children with DIABETES® Friends for Life® conference in Orlando. Many states also have diabetes camps, support groups, and mentoring programs for children with type 1. Your local JDRF chapter can provide you with information on these resources.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the "typical" experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.
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