I was once chastised by a young diabetes educator when I referred to myself as a diabetic.
“You are not a diabetic! You are a person with diabetes. You are not defined by it.” Her indignation still rings in my ears.
This was my introduction to a now-prominent dictum of care for type 1 diabetes — and many other conditions. In that moment, had someone snapped a picture of my face, it truly would have said a thousand words. Not one of them kind. And if I’d succumbed to my emotions, a curt “Excuse me?” would have been my response. Thankfully, shock held my tongue. It was neither the time nor the place and would have accomplished nothing.
We live in a day when the measure of our moral character often seems to balance on our use of the acceptable word of the hour. But my issue here is not lexical. It is philosophical.
Over the years I’ve thought many times about that exchange. I’ve chuckled over it with my diabetic daughter and with my niece, who witnessed the reprimand because I was standing next to her hospital bed just hours after she’d been told she was a “person with diabetes.” Since then, I’ve had the time and emotional space to compose the response I wish I had offered, which is this:
“I mean no disrespect, and I speak only for myself, but I must disagree. I am a diabetic. I am also the mother of a diabetic, now the aunt of a diabetic, the first cousin of a diabetic, and the first cousin once removed of two diabetics — one a generation before, one after. I’ve been a diabetic since before you were born. I had been a diabetic years before the glucose meter was invented and decades before the insulin pump. I’m one of the few diabetics in the world who has received an islet cell transplant and one of the fewer still in whom that transplant worked for many years. My diabetes is the first thing on my mind when I wake, the last thing I think about before I sleep, and often something I must address in the middle of the night. It is a consideration in dozens of decisions I make every day, never far from my mind. I could go on, but I hope I’ve made my point. Hear me when I say this: I am a diabetic, and you are mistaken if you think I’m not defined by it.”
How I wish I’d been so quick and so composed.
I stand by my statement. I am a diabetic. That’s not to say it’s all I am: I’m also a wife, a mother, a daughter, a sister, an aunt, a friend, a Christian, a book lover, a writer, an adventurer, an explorer, and so many other things that are the very fibers of who I am. And if I were not a diabetic, my life would be something quite different. Would it be better? I’m not so sure.
I’ve often thought about that hypothetical: a life without diabetes. And every time I do, I find myself in the same place, though it’s a place many won’t understand. The truth is, if I were offered a chance to live life moving forward without diabetes, I’d jump at it. In fact, I did just that when I entered the islet cell transplant program and was given a six-year reprieve, though that had its own costs. But if the offer was to go back and start my life over with the promise of never having the disease, I think I would decline.
I know it sounds unbelievable; even I cannot always make peace with that idea. But by erasing the disease I risk erasing elements of myself that exist because of it. Diabetes made me strong, disciplined, and independent. It made me a problem solver, an advocate, a strategist, and a realist. I became sympathetic and empathetic to the struggles of others. Diabetes forced me to know my body, to listen to it, to work with it, often to work around it, and to give it rest when it needs that. And I understood very young that life comes with hardships, my attitude toward them is a choice, and I cripple myself if I choose to be a victim. This is why I cannot countenance the idea that diabetes does not define me. I would be someone else without it. But it has no power over how it defines me. That’s my responsibility.
All that said — and this is where it gets complicated — when my daughter was diagnosed, I shook my fist at heaven and wept every single day for a year. Then my heart broke when I got the call that my niece now stood with us. I knew what lay ahead for them and I didn’t like it. For years, I wrestled with crushing guilt over my daughter’s diabetes, as if it were my fault. Of course it’s not, but I struggled nonetheless to come to terms with it. Then, a few years ago, I asked my daughter the question: “Given the choice, would you trade your life for one without diabetes?” A few months ago, I put it to my niece. I’d never shared my own exploration of this idea with either of them. Yet, with no leading, they each paused and then answered the same: “I would not.”
I smiled when I heard their responses, though I’d be lying if I said I am sure that’s the right answer. But these two are fierce, strong women who have taken on diabetes fearlessly. They, too, would be different people without it, and they have decided who they are with it. I treasure the bond that diabetes has given me with these women. It couldn’t exist any other way. Some wonderful aspects of our relationships are absolutely defined by diabetes. That alone might make it all worth it.
So here’s what I’d like to say to the medical community: I understand and commend your intentions. Living with type 1 diabetes is challenging. Raising a child with it is exponentially more so. But simply nuancing the words we use to talk about it does not make it easier. In fact, I think your approach might make it more difficult. When you suggest that I’m merely a person with diabetes you compromise my power over it. You suggest it is something I must separate from myself and hold at arm’s length. But I will not do that. I acknowledge it, embrace it, and cooperate with it because it is part of my DNA, literally. I’m the one in charge. And despite what you might think, diabetes has, at least in part, made me who I am today.
Linda Nelson is a principal and director of content development at The Basis Group, a marketing and brand strategy firm. The essay was adapted from a post she wrote for her blog, Diabetes Chronicles.