It sometimes seems like in between the families who are intimate with type 1 diabetes and the general public (that is not), there lies a great divide of misunderstanding. It’s a rift that grows with each diagnosis and deepens with each insensitive comment.
It’s easy for us to be offended by offhand remarks and well-meaning diatribes about diabetes. We assume people should know what we know, or at the very least understand what might hurt our feelings.
“My grandmother lost her foot from diabetes.”
At first glance, it’s obvious to us that this comment is hurtful. But when one has been living on the other side of the divide — in a foreign land where one’s children don’t have a chronic disease — one doesn’t always know the local customs here on this side.
It’s human nature to try and find a connection. What’s really happening with this comment is that the person is trying to draw on his or her own past to connect with us emotionally. They are trying to show empathy by digging up what they know about diabetes and then throwing it out there like a welcome-to-the-neighborhood pie. I personally heard something similar when I lost my husband to cancer a few years ago…
“I lost my cat to cancer.”
The people who make these comments really do have good intentions. They quickly scan their memory to find a way to connect and then put it out there. In the moment, they are trying. Really, they are. It’s up to us to decide whether this will be a teaching moment, or if we’ll walk away and lose the opportunity for change.
It took me many years to realize that most of the time, true understanding only comes from intimate knowledge. When one is affected personally by a disease or other challenge — or when someone dear to him or her is affected by it — only then does one truly understand. I’ve come to terms with the fact that most people do not know what type 1 diabetes is, and honestly, I’m thankful that they don’t. If truly understanding diabetes means they have to be affected by it, then I’m happy for their ignorance. That doesn’t mean I shouldn’t try to educate them, but it does offer me a sense of peace when we part ways, helping me to know that what I said was enough.
So when the gap between those who know and those who don’t feels insurmountable, how do we find hope? We cannot simply scream to those on the other side of the canyon. Admittedly, there are days when I’m tempted to yell at the masses. I want to stomp my feet, waving my hands while educating wildly until I’m blue in the face. I want to reach them all in one motion. I want their collective attention, and I want their collective acknowledgment of all facts relating to type 1 diabetes.
Obviously, simply stomping our feet isn’t a viable option. The only way to change the hearts and minds of the world is by taking thoughtful, calculated steps toward their side of the canyon. When we do that, we encounter the world one person at a time. That may not seem like the way to change the world, but certainly, it is the small interactions that always do.
I think about the other diseases in the world and how little I know about all of them. I know their communities want us to know too. It’s not a contest. What we need to know is that each and every one of us is fighting a battle. We need to educate about our battle, but we need to be mindful that the person we are educating has one too.
I think it would do us well to afford them the same measure of empathy we hope for ourselves.
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.