What Stories Never Taught Me: Reflections on Chronic Illness

Life’s Hard, Diabetes Sucks is a monthly column that provides space for non-traditional narratives about growing up and growing into ourselves through interviews, personal histories, and hard questions — around chronic illness and more.

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I was raised on the belief that one is never alone with a good book. Before I could read, I listened to stories. Once I was old enough to read, I was never alone. Until I got sick.

When I was thirteen, I lost my health, or I lost a part of it, and suddenly I became aware of health and how precious it is. I knew that I was healthy before I was thirteen, but I never understood the consequences of losing one’s health other than those February colds when my nose became so stuffy, I could no longer breathe properly and instantly regretted every moment I had taken breathing for granted.

The diagnosis of Type 1 Diabetes, an autoimmune disease that attacks and destroys the insulin producing cells in the pancreas, was a far greater and far more chronic loss of health than a miserable cold. The diagnosis was also an erasure. I defined who I was based on the characters in the stories I read growing up. Those characters got colds, but they didn’t get diabetes. In the hospital, I read books, and I was still alone. I realized that I would never grow up to be the sort of heroine I read about or watched in movies or heard in the bedtime stories my grandmother used to tell me. I no longer knew who I was, who I was supposed to be, or where I could fit into the world as I grew up.

Despite the painful erasure from the narratives I was raised on, I am incredibly privileged to have always found companionship in stories before my diagnosis. I understand that the narratives we celebrate do not always reflect the diverse population reading or watching or listening to them, and that many children feel alienated from classic literature and popular media far before the age of thirteen. That is why, in this column, I will speak for myself and my unique experiences and allow others to speak of their experiences. Through conversations with figures in media, culture, and academia I will explore diverse narratives and the ways in which chronic illness has influenced research, created connections, and fostered alienation.

This column is not solely about chronic illness. The irony of stories is that not a single one could have prepared me for the parts of life that have nothing to do with illness and everything to do with coming of age, growing, and learning. So, I write this column as a way of making sense of it all. Each column will tackle topics such as being denied basic care by health insurance (something endemic to America affecting both the affluent and poor), how to navigate relationships with language barriers (be that literal languages or language around traumatic experiences that are not shared), navigating seemingly inconsequential decisions we come to regret, how to forgive our bodies in a world that villainizes and weaponizes physical appearance, how to accommodate friends with severe allergies, and how to make the narratives we tell about one another and ourselves more inclusive. My goal is to humanize the alienating experiences we begin to encounter as we grow up in a fraught but also fantastically joyous world.