Is your child’s diabetes a secret?
A pediatric endocrinologist and the importance of opening up about diabetes
As a pediatric endocrinologist, I see many kids who tend to hide their diabetes or other diseases.
They could all learn a lesson from a young woman named Marissa Heintschel.
I learned about Marissa during one of my recent searches for news about my field, pediatric endocrine. The news story featured students in the Frisco high school independent study and mentorship program.
One of the students in this program was Marissa, who had chosen pediatric endocrinology as her focus of study. I reached out to her via Twitter to learn more about her experience in the program and was very impressed by her story.
Like many in my field, she had a personal connection to pediatric endocrinology, having been diagnosed with Type 1 diabetes at 7 years old. She shared with me her passion for medicine and her experience she’s gained and the research that she did during her year in the program.
I asked how her experience had changed her view of children living with a chronic condition such as Type 1 diabetes. Her answer gave me a fresh, personal perspective on challenges of life with this chronic condition:
“I have always made it very public that I had Type 1 diabetes,” she said. “I went through the whole phase of trying to hide it away from people. I wish I would’ve realized sooner the importance of taking care of myself because when I was 14 or so I was stupid and thought that if I ignored my diabetes it will go away and that I could run away from my problems.
I wear an insulin pump. I’ve been called things like a robot and people in random places will just stare at me.
There was once this kid in my class sophomore year that I started to become really good friends with. One day I asked where he went and someone said that he went to go take his shot because he was diabetic. It was so surprising to me because no one really knew he was diabetic.
So then I started talking to the kid more and more about his diabetes and he just opened up to me and was able to talk about his problems that only people like us could understand. After he opened up to me, he told me how thankful he was that we had grown closer because he now felt he had the confidence to tell people about his diabetes.”
Marissa’s story got me to thinking about the importance of sharing about having Type 1 diabetes and how difficult it can be. I, and others on the Cook Children’s diabetes team, speak to children and their families about sharing about their diabetes when we meet with them at Cook Children’s during the difficult period of initial diagnosis.
These are the two important reasons for S haring with others about having diabetes.
Sharing opens the opportunity to understand better the routine (checking blood sugars, taking shots, meal planning, etc.) that someone with Type 1 diabetes must do daily. Sharing opens up opportunity for support and encouragement. In Marissa’s case, it may be the opportunity to encourage and support someone else with Type 1 diabetes.
Marissa’s story also shows that sharing does open up vulnerability and risk. I asked Cook Children’s endocrine clinical therapist, Kim Cox, how she talks to children and families about sharing about diabetes.
“I usually talk to them about how ‘secrets’ tend to make other kids think it’s a bigger deal.
Why don’t they want others knowing? Are they
... afraid of bullying?
Being honest (but brief) about answering peers questions seems to work best. For example, I have diabetes, I have to take medicine when I eat now. We then discuss those issues.”
I use the example of a kid who gets glasses in school. In the beginning, you notice every time you see them, peers will comment and possibly even say mean things, but as time goes on, their glasses just become part of them and you only notice if they don’t have them on. Other kids move on to something else.
Safety is important because even in the best of cases diabetes care is unpredictable. High or low blood sugars affect mood and behavior. In particular, a low blood sugar can cause erratic behavior and eventually unconsciousness. Knowing about the diabetes allows others to have the advantage of understanding and help someone with Type 1 diabetes.
Marissa has a future of opportunity ahead of her and will be starting college at my alma mater, Texas A&M, where she will major in biomedical engineering and pre-med. She told me that she chose biomedical engineering because the potential that technologies such as stem cell research and tissue engineering for a cure for diseases such as diabetes. Being a doctor is her dream, and I think that she has learned a lot from her experience that will help her in the long journey to a field in medicine.
Joel Steelman, M.D., is an endocrinologist at the Cook Children's Endocrine and Diabetes program, which treats infants, children and teens with conditions that are caused by or affect the hormonal balance of the body. We understand the importance of working together and that's how we approach the care of our children.