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.
Great thoughts I fully understand as a type 1 diabetic. Thank you for sharing!
Stigma is so difficult. I wish we could figure out how to help each other. I will speak the truth when I find misinformation and hatred. I am with you.
I think spreading the truth is the best thing that we can do! Thanks so much for your comments Rick!
Couldn’t agree more! Great post. People see all my sons equipment and think it’s all under control. Trying to explain what it is like tip toeing into his room in middle of night to make sure he is breathing is tough and seems a little self serving, but it is just one example of how the omnipod and g4 do not make it alright. Thanks JL
Absolutely Jeff! The medical devices help with the journey, but definitely don’t make it alright. I think what you do as a parent of a child with type 1 is an important part of sharing the whole picture!
I understand only superficially how hard it is living with diabetes as I have a cousin in her 50’s and a friend’s son who is 12 who both have type 1. Thank you for your insight. Like many situations in life, it’s so hard to say the “right thing” to the person effected by something like this. And as far as that is concerned, after reading your blog I’m still completely in the dark. It often feels like a no win situation. Do we ask you about it? Do we ignore it? Do we say something positive or tell you it sucks? What on earth can we say or do that isn’t offensive? I’m asking this in all sincerity. Obviously listening and trying to understand are most important, but it feels like any response one could give in the course of the conversation would be “wrong”. Maybe the answer is different for every one, but I’m curious what your thoughts are. What do you want to hear?
I totally understand your question. And you’re right that the answer is probably different for everyone, I’m sure that if you ask 10 people with diabetes the same question, you’ll get 10 different answers! But here’s mine, I always want people to ask me questions for the purpose of understanding. People can literally ask me anything and I will answer to the best of my abilities, my primary point in writing this post was to stress how important it is for people who live with diabetes (or really any chronic illness) like me to be clear and honest. Often I’ve had experiences like that one I described where someone learns new things about diabetes that unsettles them and they want to feel better, which is where the self-comforting questions come from. Personally, I’m okay with someone telling me that it must suck. I also like it when people let me know that they learned something from the conversation.
I would love to know what others tell you if you ask them. Thank you for taking the time to comment, I really appreciate it!