I'm not a diabetic, I’m a person with diabetes. I was diagnosed with Type 1 diabetes in 1993. I thought my year of exhaustion, weight loss and crazy mood swings were the result of a bad marriage and the stress of parenting 2 active boys, ages 3 and 6. But for some reason, that day, after drinking my umteenth glass of water which did nothing to quench my thirst, I stopped and thought about the symptoms I'd been living with for over a year that suddenly seemed to coalesce in a moment.
I called the doctor and described my symptoms. “Do you think I have diabetes?” No one was going to tell me that over the phone. I went in for a test and 24 hours later I had a diagnosis: Type 1 diabetes. A week later, I was staring at a much-xeroxed piece of paper titled Diabetic Diet with boxes and columns to fill in: food item on the left, amount in ounces and cups on the right. There were other pieces of paper: Diabetic Eating Guidelines and Diabetic Food List. The diagnosis was traumatic enough, but these guidelines and sample diets shrank my world into one miserable, tunnel-visioned focus. I was a diabetic–walkers, blindness and kidney failure loomed on the horizon.
But I followed the guidelines and life came into balance. I gained weight, which was good though initially unappreciated. After months of uncontrolled high blood sugars, I had lost quite a bit of weight from an already thin frame. A few months before my diagnosis, friends began saying, “You look gaunt. Are you OK?” They said “gaunt” but I heard “thin,” another reason it took me so long to see a doctor. I was eating what I wanted and loosing weight–how could this be a problem? But of course it was.
In those initial months I faithfully followed the Diabetic Diet. I ate the suggested amount of food from the suggested food groups and took the suggested amount of insulin to cover the carbs I was faithfully counting. One night, after gobbling down half a peanut butter and jelly sandwich to cover plummeting blood sugars (I still had no idea how much to eat to offset a low), I was hit by a bolt of insight. I said to myself, “I’m going to fit diabetes into my life not the other way around.” In other words, I would define what I ate and when. I would define how I lived my life, not diabetes.
It’s taken years to develop healthy self-care practices. I'm not rigid but I have routines–routines I created myself not routines imposed upon me. I’ve come to believe wellness has 3 interactive practices: pursuit of knowledge about the condition, a creativity practice, and a mindfulness practice (or some kind of spiritual practice). The word "practice" is used deliberately to mean an activity that is part of life, essential to life and life affirming.
My blood sugar control can still be erratic and difficult at times. Sometimes I feel overwhelmed, irritated and discouraged. Feelings can’t be avoided but they can be handled with skill and kindness. Creative, meditative practices have encouraged me to take care of myself with kindness and compassion, using knowledge, creativity and mindfulness. There are no quick fixes. Sometimes situations turn around rapidly after a diagnosis but deep and lasting change is the work of a lifetime.
Words are powerful. I may be dealing with a condition or illness but I am not the illness or the condition. The word "diabetic" defines me as a disease. I’m not. Sometimes groups or individuals claim a noun or adjective as a way to re-claim power, but I’d rather nix labels altogether.
I actively explore the question, "what does it mean to be truly healthy?" Advances in technology, nutrition and exercise are important, but I want creativity and empathy at the center of my life. I'm a public health professional, health advocate, editor, writer, artist, parent, and so much more. I also happen to have type 1 diabetes. That perspective has deeply affected how I take care of myself and interact with others.
Valerie has lived well with T2 diabetes for 23+ years. She credits a mindfulness meditation practice, access to health care, healthy food and exercise, a circle of supportive friends/family, her creative pursuits in visual arts/writing–and luck–to being complication free so far. She works in community health, and trained as a diabetes lifestyle coach. She believes both clients and providers would benefit from narrative medicine practice in the healthcare system.