There are many challenges that parents of children newly diagnosed with type 1 diabetes have to deal with -- things like monitoring your child's blood sugar throughout the day, managing what your child eats and scheduling doctor and educator appointments. One unexpected challenge can be addressing all the well-intended but often misinformed questions of family members. Tongue-tied? Below you'll find five commonly asked questions and suggested scripts for answering each one, crafted with the help of Gina Di Napoli, pediatric nurse practitioner and diabetes educator at the Naomi Berrie Diabetes Center at Columbia University Medical Center in New York City.
Question: Is that the same as what Grandpa's friend Ed has?
What to say: Maybe. But it's more likely that he has type 2 diabetes, which is more common. That's different from what my child has. In people with type 2, the body makes insulin, just not enough. Adults with type 2 can often manage their diabetes with diet, exercise, and oral medication. People with type 1 diabetes, on the other hand, have to get the insulin they need from injections.
This question can be particularly frustrating because many people know someone with type 2 diabetes or have it themselves. Subsequently, they'll make assumptions about type 1 based on the information they have about type 2. Explaining that there is a difference between the two conditions can help clear up the confusion.
Question: Will she outgrow it?
What to say: Unfortunately, no. We'll be helping her manage it every day with insulin, which will help keep her healthy, but it's not a cure. She'll have diabetes her whole life. The only chance that it will go away is if scientists find a cure someday.
It's human nature to look for hope in the face of this kind of diagnosis. A direct answer can help well-meaning family members accept reality.
Question: Should he be having that cookie?
What to say: He can still eat sugar -- even candy, cookies and birthday cake. We just need to adjust the amount of insulin he takes depending on how much carbohydrate he eats or is planning on eating. Of course, just like all children, it's better for him to have sweets as a treat, not at every meal.
It's a common, albeit incorrect, assumption that people with type 1 diabetes can't eat certain things, particularly sugar. With that in mind, try not to take these kinds of questions personally. Family members, in an attempt to be helpful or accommodating, can come across as judgmental. They may watch to see what you're feeding your child, ask questions or make comments. The more you make it clear to them that people with type 1 diabetes can eat almost anything -- but simply need to adjust their insulin injections accordingly -- the more they'll understand.
Question: Did she get it from eating too much junk food?
What to say: No. You can't get type 1 diabetes from eating too much sugar or junk food.
In an effort to understand a diagnosis that has no traceable cause, or because they're confusing type 1 diabetes with type 2, people may seek someone to blame. Avoid getting defensive (you know your child's diagnosis is not at all your fault) and give a short, direct answer to this question to help nip it in the bud.
Question: Then what caused it?
What to say: Doctors can't be sure why a certain person gets type 1 diabetes (although they know you can't catch it from someone -- it's not contagious). They believe that in general, it's caused by a combination of three factors. Part of it is genetic -- she may have been born with a greater chance of developing it. Second, her body started attacking the cells in the pancreas that make insulin. The third part is an environmental trigger -- for example, maybe a virus that may have triggered the attack on her pancreas.
Family members may be worried that because your child was diagnosed with type 1, their child may get it too. It's important to let them know that there is no way to prevent type 1 diabetes or to determine exactly who will get it. Despite the uncertainty, explaining this can actually help alleviate their anxiety.
Part of your job as the parent of a child with type 1 diabetes will be to educate those around you. Lack of information can create fear in friends and family members -- fear that their child could get it or fear that something bad might happen when your child is in their care. If they're asking questions out of concern or even sheer curiosity, let them know that the best thing they can do for you and your child is to read more about diabetes. Direct them to articles, and bring them in for a session with your diabetes educator or dietitian. For starters, you can print out these answers for them to read. The more information they have, the more supportive they can be.
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.