When my son James was diagnosed with type 1 diabetes, he was so little, and I had a natural inclination to keep him safe in all ways. For sure, I wanted to keep him physically safe. But I also wanted to keep him away from all the people that asked inconvenient or obnoxious questions or gave troubling commentary. Like, “Did you eat too much sugar when you were little?” Or, “My great aunt Sally had diabetes and…” Every parent of a child with diabetes has unfortunately had negative experiences with such conversations.
But of course, it wasn’t possible or even desirable to keep James shielded from interacting with the world at large for all of his childhood. In order to take advantage of all the good kinds of social experiences in life, I came up with a few strategies to help us to navigate the bad.
First, we had to consider James’ age and maturity. When James was very young, he understood so little of his disease that much of the inference and subtlety in the comments and questions was missed by him entirely. At this stage I felt the biggest way I could help him was to provide him with optimism about diabetes, openness to help him feel comfortable discussing anything that bothered him, and unconditional love. In other words, we created a climate that would allow him to come from a place of strength.
We also taught him the basics of diabetes management and a simple explanation of how the disease actually works. I remember a very young James explaining to another child that he has to get shots “because a part of my pancreas doesn’t work” and that “it hurts a little bit at first but doesn’t bother me too much now, and if I get a shot I feel better later.”
As James got older, the interactions got a little more complicated. He was more likely to understand the full meanings of the comments or questions, making them more potentially damaging. But again, our strategy with James was to preemptively discuss these kinds of conversations. We decided that we’d start with the theory that most people who ask unwelcome questions or tell scary stories are really not doing it to be hurtful or obnoxious. Most people come from either a sincere place of wondering or a misplaced desire to relate. Having this kind of assumption about the motivations of the other person helps to defuse hurt or irritation.
To a person who asks a prying question, the correct response can be a well-informed answer! I explained to James that he isn’t obligated to answer every question, but if he understands the question and can give good information, it might help that person to be a little less obtuse the next time around.
Some of the worst interactions involve strangers telling James horror stories about their relatives’ bad experiences with diabetes. I still dread these types of conversations, and I don’t think we have come up with a bulletproof solution. Again, we fall back on the idea that they aren’t trying to be obnoxious most of the time. This actually softens the blow a little bit. The best counter we’ve come up with is to let James know that diabetes often has very good outcomes. We share the stories of athletes and scholars and also all the real-life people he knows with type 1 who are living their best healthy lives. Then we let him decide whether he wants to engage in a discussion with the well-meaning person or to simply say, “I’m sorry to hear about your aunt,” and leave it at that.
That’s probably the final point of how we’ve dealt with it all. We started with building a positive environment and a solid base of information. Next, we layered in the assumption that most people’s ignorant or troubling statements are not motivated out of malice. And we ended with the principle that although it is always okay to try to correct misinformation or to teach better principles of how to interact with someone with diabetes, it is ultimately not James’ responsibility to do so.
It’s impossible to protect James against all the false statements, hurtful stories, and prying questions that he’ll encounter throughout his life. The best I can provide him is internal strength from the love we give and the truth we teach, a positive (and often true) observation about the motivations of the commentary, and grace to let him deal with it in a way that feels healthy for him, whether that involves an attempt to correct, or simply to excuse himself from the interaction. As we take these proactive steps, it in turn builds our confidence that he can be strong, because we’ve given him the tools to succeed.
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. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.