I estimate that over the years I’ve talked to hundreds of people about type 1 diabetes. I talk to them for various reasons. Some people are part of my own talk therapy. Some people I talk to are strangers who observe James’ pump or see us testing blood sugar and they have a genuine curiosity that I hope to fill with knowledge, replacing misconceptions that are out there. But I’ve also talked to lots of people in the context of caring for, watching, or teaching James.
I find that one of the biggest challenges in teaching others to care for James involves hitting the appropriate tone about the nature of diabetes. As a disease, it’s very serious, but it’s also the day-to-day reality of life for James — a reality that I’m attempting to normalize as much as possible! So is it the scariest thing ever … or no big deal? Sometimes I really fail at achieving the right balance between these extreme views and lean too far in one direction or the other.
For example, I’m fairly certain that I have freaked out some babysitters. I feel like it’s pretty important to inform caregivers about the possibility of low blood sugars. But I always wonder, do I go too far? Should I name the serious consequences a severe low can cause, or is that just total overkill?? I think probably any caregiver that spends a significant amount of time with James should be told about this. On the other hand, a friend’s parent who watches him for an hour or two during the course of a play date maybe doesn’t need that much information.
Now that James is older, I much more often make the mistake of being perhaps too casual in mentioning what diabetes can mean for him. For example, James has a new leader in a weekly activity that he does. While we’ve gone through the “training” process with prior leaders, James is getting so independent now that I really thought he’d be okay during the activity session! Especially since I’m only gone MAYBE half an hour, not leaving much time for something to happen. But wouldn’t you know, just last week I came in to check on him only to see him pale and sweaty. I could immediately tell that he was low. Turns out the kids ran a half mile, and James’ blood sugar (predictably) dropped. I could tell it was time to have a conversation!
So what is the answer? How do you make sure that you convey the fact that diabetes is a serious disease and at the same time manage not to freak people out? Well, I’m not perfect at this yet. At all. But usually I will say, “Hi. I’m James’ mom, and I want you to know that James has type 1 diabetes.” Then I wait. Sometimes they have a comment. If they know about diabetes that informs how much information I need to give them.
I always try to give information about what exactly diabetes entails for that person in that context. Usually I’ll say, “James is allowed to eat anything he wants. But if he eats anything, he’ll need to give himself insulin. Here’s my cell phone number. You can call me if he ends up wanting to eat something, and we’ll walk through what James needs to do. He can do it mostly himself, but I’m here to help.” Then I’ll talk a little bit about lows. “The one thing to watch for is that James’ blood sugar can go low quickly. When James is low he feels hungry, or he might look sweaty or clammy or confused. If he looks like that at all, just tell him to test and give me a call.”
This super simple rundown works pretty well for now. Often a second conversation is eventually needed. I’m really direct now. If I see what I interpret as a miscommunication, I try gently to correct it. I try to frame it in terms of things to DO rather than vague ideas about what diabetes means. How have you handled this discussion with casual caregivers?
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.