I feel like I’m in a perpetual state of conflict over the perception of my life with type 1 diabetes.
Because I choose to not hide my diabetes, I found myself at a party with my Dexcom sensor fully visible on my arm, talking to a friend’s husband. He was asking me the questions that I’m used to answering. The ones I get on a regular basis from family, friends, acquaintances and strangers. The questions were about what my equipment does, what I can and can’t eat, etc.
Then came the familiar one, “So as long as you do what you’re supposed to, it’s not a big deal. Right?”
This is the self-comfort question. The one that they use to try to prompt me to just say, “Right,” so that they can walk away from our conversation feeling okay. So that they won’t be forced to think about me and my plight next time they eat food or so that they can go on living like diabetes is a minor illness.
I can’t in good conscience say, “Right” and let them off the hook, because type 1 diabetes really is serious business. But party etiquette keeps me from shouting, “ABSOLUTELY NOT!” at them. So I take the middle road that is, “Not exactly.” And I explain that I have the knowledge and equipment to do everything “right,” but that it’s not an exact science so I have to deal with extremes and I stress that diabetes is a factor in every single thing that I do. Sure I can eat whatever I want, but I can’t always eat what I want, when I want to and that I need to make smart choices and time things right.
No one wants to leave a conversation feeling like what they believed about diabetes for the longest time was all wrong (i.e. people who get diabetes deserved it for being fat, lazy slobs and that all diabetes can be cured by eating “right” and exercising). People don’t like it when you change their broadly accepted paradigm that young, thin, healthy people don’t get diabetes. And they don’t like to think that it’s a serious disease, because it’s “just” diabetes; no one dies from diabetes. But none of that is true.
Diabetes doesn’t discriminate and it’s hard work to influence what it does to our bodies. Even more than that, diabetes can literally kill me, which weighs on my mind every day.
I never want to bring anyone down, especially at a festive event, but I don’t want to let them off the hook either. When they ask the self-comforting questions, it’s up to me to make sure that they leave the conversation with a new perception and at least a little empathy.
“You’re so strong,” or “You handle it so well,” are also self-comforting statements that are intended for the person who says them to feel better about my disease or even get inspired by my strength and competence. To warm their spirits that they know a “trooper” who takes their illness in stride.
Dealing with diabetes is hard work. Anyone who has any type of diabetes has a tough road. I don’t know about everyone else, but personally, I don’t want to be your inspiration. I want you to understand. Even better, I want you to spread the understanding and challenge the stigma whenever you encounter it. Don’t think that because you don’t live with diabetes you can’t say, “That’s not true” when someone spreads misconception, even if it’s in the form of a joke.
My illness, and in turn my toughness, is not your comfort, your solace. It’s a real, serious part of my life.