57: What To Do When People Have No Idea What Your Life is Like

Sweet Talk for Parents of Kids with Type One Diabetes

The mom who joins me this week — Michelle — doesn’t have a specific question; instead, she wants to face off with the broad challenge of how lonely it can be to have diabetes, both for her and her T1D daughter. Ultimately, she’s bothered by the ways other people misunderstand what her daughter lives and struggles with. She’s frustrated that people think her daughter has type 2, that they think she can’t eat certain things, and that they somehow think that the cause of diabetes is that her daughter ate unhealthy food. She’s irritated that people don’t understand the ongoing, chronic nature of the care that’s required with type 1. And she wants to figure out if there’s a way to protect her daughter from the barrage of questions and misunderstandings that come her way.

Although Michelle and I agree that it’s painful and stressful when our experience of living with and taking care of diabetes is so invisible and misunderstood, we also look to the strength that comes from choosing to be an educator and an advocate in our lives. I make some suggestions of the kinds of things that Michelle (or her daughter) could say when the comments come, while also acknowledging that sometimes we don’t have the bandwidth to respond so generously to people’s comments. As an antidote to other people’s ignorance, I suggest — as always — the importance of surrounding ourselves with people who do understand our experience.

Michelle shifts to talk more about her daughter’s struggles, and how all the questions people ask push her to hate her diabetes. We look together at ways Michelle can brainstorm with her daughter about what to say when these interactions happen, while also encouraging mom to acknowledge how genuinely hard this is for her daughter. And Michelle names all the ways that she’s trying to create more structure in her daughter’s school for a better understanding of type 1. Tune in for this broad-ranging conversation that helps us think about what it’s really like to live with T1D, even years after diagnosis.