You’ve been diagnosed with type 1 diabetes, a condition where your body cannot produce insulin, leading to high blood sugar levels...
You’ve been diagnosed with type 1 diabetes, a condition where your body cannot produce insulin, leading to high blood sugar levels if left untreated. Managing this condition involves taking insulin, monitoring blood sugar levels, and making lifestyle changes. You have everything under control. Now you have children. You have each of them tested early, and one or more of them has inherited type 1 diabetes. You’re disappointed, but you know early treatment is essential, so you do for them the very things you have done for yourself: insulin therapy, regular monitoring, a healthy diet, and plenty of exercise. Friends and family might not understand. “But he’s only 3! How can he have diabetes? He looks so healthy.” Or, more frustrating, “I’ve read diabetes can be cured with diet alone. It’s all a myth to make money for big pharma.” You explain the genetics, your own diagnosis, and finish with this: “And my (father, aunt, brother) had severe complications from diabetes.” Then they listen. This may all sound familiar, or maybe it’s the first time you’re hearing about this often-undiagnosed yet common disorder, which affects many people, similar to familial hypercholesterolemia. Yet if you have children -- or grandchildren -- you know protecting their health sits at the top of the must-do list. With lifelong disorders such as type 1 diabetes, our responsibility as parents also includes preparing our kids to manage their health throughout their lifetimes. So we provide age-appropriate information about diabetes, how their bodies work differently from others’, how consistent treatment is essential. How it’s passed down from generation to generation. We also teach our children to be wise consumers of information. We explain that knowing who to trust on the internet is hard, but when someone says they have a secret remedy no one in medicine wants you to know, that’s a red flag. “Eat this, not that” is an effective strategy, when used in moderation, to educate our kids about the importance of eating healthy. But when overly zealous parents place too much focus on diet, kids with diabetes can fall into eating too little due to feeling anxious about their condition, sneaking “contraband” in private, or developing other unhealthy habits. Instead, we teach by example that a healthy lifestyle is important for everyone, but an occasional splurge is fine. We explain diet alone will never “fix” diabetes, that insulin and other medications are needed to do the work our bodies don’t do effectively on their own. Yet as our children grow and become parents themselves, we have less and less impact on their decisions. This can be a welcome relief. But sometimes, no matter how much information we give people -- even our children -- they may not choose to follow through. In my family, the poor outcomes of previous generations have been replaced by a mother who, at 67, has had no severe complications. So many other families have a similar story. Because I’ve received care for my disorder since I was young, my children and grandchildren have never seen firsthand what can happen when diabetes goes untreated. I’m thankful severe complications are only a story to them, yet the sense of urgency is lost. When our adult kids take care of their diabetes, we breathe a sigh of relief. The baton has been passed. But if they don’t seek or maintain treatment, it can cause feelings of anxiety for us. It’s easy to become overly zealous about far more than diet now, constantly pushing them to make the health care decisions for themselves and their children we know are in their best interest. This rarely works. There are no easy answers, no magic bullets to ensure our children pay attention to the wisdom we’ve gained through our own experiences, especially when theirs have been so different. All we can do is continue to love them, educate them, and quietly nudge them to consider the impact of their actions -- or lack thereof. Our devotion to raising awareness of type 1 diabetes, like most everything else in life, begins at home.