My family didn’t believe in being sick. Being sick was a sign of weakness, a sign of being needy, and neediness was bad. We were Stockwells who could trace our ancestry all the way back to the Mayflower. We believed in moderation and hard work, in doing things ourselves. When Mom got sick she was “fighting something,” as if to be sick was to lose a battle. Dad believed you could battle sickness with your imagination, and that the body could be talked out of being sick. Whenever I had a cold, he would tell me to visualize my white blood cells as polar bears coursing through my veins, fighting the sickness. “Tell yourself: I am healthy,” he suggested, as if my body would listen.
When I was diagnosed with type 1 diabetes at 14-years-old, my body wasn’t listening. I remember sitting on the hospital bed in the children’s ward with IV’s coming out of a bumpy vein in my arm and hearing the word diabetes. In my head it sounded fat, a word with the B in the middle so you had to close your mouth around it, your lips sticking together and punching out the B and the etes kept going like an echo. Diabetes, Diabetes. I hated that diabetes sounded like die and that at 14 years old, I was no longer invincible.
The term, “diabetes” was derived from the Greek word for “siphon” because the water drunk by people who were sick with diabetes seemed to run right through their bodies like a siphon. Years later, when researching the history of my disease, the image of a siphon was fitting. I discovered that in 1674 an Englishman Thomas Willis published, “The Diabetes or Pissing Evil.” Willis observed that the urine produced by people with diabetes was different from the drink taken in, and sweet as if it were “imbued with honey.” In the 1700’s “Mellitus,” the Latin word for sweet/honey was added to the definition when physicians discovered that the urine of diabetics was sweet to the taste and heavy with sugar.
Regardless of its origins, when I was diagnosed twenty-five years ago, the word diabetes just sounded like darkness, death and disease – like a bad dream, it was as if I’d slipped down a hole into another world, Alice in Wonderland style, and couldn’t speak the language. All I knew was that my body had stopped working. Everything had been fine, but something had happened, and suddenly my cells were waging a war inside my body, a failure of communication.
In the first few months after my diagnosis, what I remember most about the language of diabetes was learning words like: food exchanges, free foods, starches, complex carbohydrates, protein, glucose, insulin-regular and nph-test strips, complications, amputations, retinopathy, kidney failure, seizures, and chronic illness. I remember feeling like I had crossed some invisible line, from healthy and young to old and sick. I remember going to doctor’s appointments and sitting in waiting rooms with old, sick people (there was never anyone who looked like me) and thinking how did I get here? I remember reading the diabetes magazines that were always in the waiting rooms, and being scared by the stories of complications and the ads for diabetic socks on the back page. When my doctor told me I could do everything my friends could do, that diabetes wouldn’t change my life, I remember wondering how I was going to go back to school and explain what had happened, and what I had become. Was I sick or was I healthy? Did I have type 1 diabetes or juvenile diabetes; was I a diabetic or a young woman with diabetes? I wanted to know how I was supposed to tell my friends who I was if I didn’t have the words.
Now, after all these years with diabetes, I’m still not sure that I am fluent. I can talk about basal and boluses and thankfully there is no more need for words like “exchanges,” but after hundreds of years, the language of diabetes remains unclear because we are a large and varied community of both healthy and sick.
Diabetes is an umbrella term that includes type 1, type 2, LADA, and gestational, which creates a lack of cohesion and identification. It’s a disease that includes everyone from marathoners to amputees. Diabetes suffers and loses strength because it varies so much, and perhaps from this comes the inability to name ourselves. Unlike other illnesses such as breast cancer, diabetes has struggled to create a strong identity to market itself. Diabetes is confusing because the nature of the disease and how we treat it, for the most part, depends on how we care for ourrselves. Cancer patients are treated by doctors. We get our prescriptions, A1c’s and advice from doctors, but we take care of ourselves.
Diabetes will always be different in each person who has it, and because of that the way to find unity and identity all comes down to words. If we struggle to separate ourselves into groups and types and argue about whether we have diabetes or are diabetic, we all lose. There is strength in numbers, and I want to speak freely and clearly. I want to find the words that illustrate what I’m feeling. Instead of having a “seizure” I am low, instead of following a “diabetic diet” I follow a “healthy eating” plan, instead of living with “restrictions” I live with “moderation,” instead of worrying about “complications” I take care of myself to avoid future “challenges.” These are just some ideas. Google diabetes slang and you’ll find a wealth of fun suggestions from “shooting up” to “insulinate.” That’s the thing about language, it’s in flux, always changing and there is room for correction. I have diabetes and I am a diabetic. I think if we don’t know what to call ourselves, we won’t have a voice.