Q&A: The ABCs of T1D

The ABCs of T1D

Question:

I am a parent with type 1 diabetes. My children are now ages seven and two, and they are asking questions about it. How do I explain to them what type 1 diabetes is in a way that will help them understand and not be scared?

Answer:

I have been in this exact same situation, and I am so glad you’re asking this important question. My husband of many years has type 1 diabetes (T1D). He was diagnosed 21 years ago, at age 22. I have known him since before his diagnosis, so we have shared this experience from the beginning. And we have two daughters, ages eight and 13.

I have seen how a person with T1D can face different challenges from one day to the next. One of the pressures my husband deals with is the constant “overseeing” of his body. It is an incredible responsibility for him—and for the ones who love him. And children—even very young ones—can be very sensitive to those pressures. But in my experience, talking to your children is the single best way to make sure those pressures don’t have a negative impact on them. It can be easy to shy away from talking to children about things that might be hard to explain or subjects that are emotionally difficult. But the truth is, children are eager to know more, and they feel more comfortable when they have (age-appropriate) information than they feel going without it. So my first piece of advice: be honest, forthcoming, and reassuring.

Because there is such a wide age difference between your children, you may need a slightly different explanation for each one. The goal is to share information on what your day-to-day life is like managing your T1D, and how it might affect them. When my husband and I first talked about it with our own kids, we told them that it’s a little like when they are sick and they have to take medicine so their body can be well again. Except that for their dad, it’s something he has to do every day to keep himself healthy, by testing his blood sugar and taking his medicine—insulin. You can also tell them about how your T1D affects how you eat—that you have to think carefully about what you eat; that you have to eat at certain times; and that you sometimes have to take your insulin before or after you eat, all to keep healthy.

You can also explain that because of all these things you have to do, sometimes your body might not be “quite right,” and when that happens, you may need either insulin or certain kinds of food very quickly. Give them examples of the kinds of things you eat or drink when your blood-glucose is low. They may not be quite ready for the detailed explanations of highs and lows, but if they have this more general information about food and insulin now, they will be better prepared for learning more about T1D as they grow older.

I think it is also a good idea to invite questions—and I’m sure they will have some. For even the best, most attentive parents, it can be hard to know what is on a child’s mind. Letting them ask whatever questions they have is one of the best ways to find out.

The last piece of advice I have is to seek out a support system for yourself as well. There are so many families out there like ours, and so many parents who have dealt or are dealing with very similar situations. JDRF has chapters in every state, and they are great at connecting people in the T1D community. I have met loads of wonderful people this way and found lots of support. JDRF also offers free resources to help you through various situations you may face. For example, T1D blogger and JDRF friend Kerri Sparling wrote an article last year for Countdown about a very similar subject, called “Talking About T1D.” It’s a great read. You can also check out JDRF’s series of Toolkits written for people of various ages and at various stages of T1D.

Take heart! I am grateful every day that I met and married my husband. He is an amazing role model for how to go on with life having T1D and not let it get in his way. I think that our children are better people for living with their father who has T1D. They are more understanding and empathetic of others; they understand health and nutrition better; and they see the value of resilience firsthand each day. I would suspect the same will happen for your children. It really is the silver lining.