I Am a Diabetic

A number of years ago, I was 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.

Apparently, this was the wisdom of the day in the world of diabetes education. Maybe it still is, maybe not. I don’t know. But, 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 very 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.

Over the years I’ve thought many times about that woman, the world she represented, and, in my opinion, their lack of insight. I’ve chuckled over it all with my daughter and with my niece who heard the reprimand with me 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 you are wrong. I am a diabetic. I am also the mother of a diabetic, now the aunt of a diabetic, the first cousin of a diabetic, as well as 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 the sun rises, the last thing I think about when darkness falls, 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.

“If I was not a diabetic my life would be something quite different. But would it be better? I’m not so sure.”

Linda Nelson

I stand by my statement. I am a diabetic. But that’s not all that I am. I’m also a woman, a wife, a mother, a daughter, a sister, an aunt, a friend, a Christian, a lover of books, a writer of words, and so many other things that are the very fibers of who I am. So no, I’m not merely a person with diabetes. I am a diabetic. And in my opinion, that is not a bad thing. It can be a hard thing sometimes, but it’s not something so horrible we must fear the very word as if it was to utter Voldemort. If I was not a diabetic my life would be something quite different. But 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 was offered a chance to live life moving forward without diabetes, I would jump at it. In fact, I did just that when I entered the islet cell transplant program and was given a 6-year reprieve. 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 it. 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, and a strategist. 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 when to give it rest. And I understood very young that life comes with hardships, my attitude towards them is a choice, and I cripple myself if I choose to be a victim. This is why I cannot contend with the idea that diabetes does not define me. I would be someone else without it. But it does not have power over how it defines me. That is 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 was my fault. Of course, that’s ridiculous, but I struggled nonetheless to come to terms with it. Then, a few years ago, I asked my daughter the question. A few months ago, I put it to my niece. “Given the choice, would you trade your life for one without diabetes?” I’d never shared my own exploration of this idea with either of them. Yet, with no leading, they each paused then answered the same. “I would not.”

I did smile when I heard their responses, but I’d be lying if I said I knew they made the right choice. But these two are fierce, strong women who have taken on diabetes standing tall. They, too, would be different people without it, and they have decided who they are with it. I’m so proud of both of them as well as the amazing men they each found who own this disease with them. I treasure the unique bond that diabetes has given me with these women whom I love. It couldn’t exist any other way. Many aspects of our relationships are absolutely defined by diabetes. That alone might just make it all worth it. At least for me.