The Face of Diabetes; The Importance of Role Models

When I was diagnosed with Type 1 diabetes in 1985 at 14 years old, I had just moved away from home for the first time. My hometown in Vermont was so small that we didn’t have enough kids for a high school, so my parents sent me to a private boarding school in New Hampshire. I loved my new school, Proctor Academy. I loved the green fields, white dorm houses and red brick buildings where we called our teachers by their first names. I couldn’t wait to shed my small-town skin and become a sophisticated young woman. So when I started feeling tired and thirsty and kept waking up in the middle of the night to go to the bathroom, I ignored the symptoms. But when I lost 15 pounds in five days, I knew something wasn’t right.
That afternoon I reluctantly walked to the school infirmary. The nurse weighed me and asked why I’d lost so much weight, and I shrugged; I didn’t have an answer. She put me to bed in the sick room and went to call my parents. I could hear her on the phone telling my mom she needed to come right away, “Your daughter’s anorexic,” she said. I wasn’t anorexic. Mom took me out of school, drove me to our local hospital, and I was diagnosed with Type 1 diabetes.
Twenty-six years have passed since that day, and I am still struck by the irony of my initial misdiagnosis. Lillian, the nurse who told my mother I was anorexic, had Type 1 diabetes herself. She was the only other person at my school with diabetes and was not an inspiring role model for a 14-year-old girl.
Personal philosophy
That’s why I wrote my book, “The Smart Woman’s Guide to Diabetes, Authentic Advice on Everything from Eating to Dating and Motherhood.” I knew the real faces of diabetes were out there somewhere. I knew there were women who were living away from home, training for marathons, traveling to different countries, looking for love, getting married, having babies and growing old with diabetes, and I wanted to find them.
Writing this book helped me create a personal philosophy to living well with diabetes that is made up of five basic components.
1. Role models
Having positive role models is a key component to living well with diabetes. In the course of writing my book, I had the opportunity to speak with women such as Mari Ruddy, founder of the nonprofit organization Team WILD, We Inspire Life with Diabetes, who “empowers people with diabetes to take charge of their health by teaching how to be an athlete first, then a person, then an athlete with diabetes.” Women like Ann Albright, Ph.D., R.D., who gave me the idea of having a personal philosophy for living with illness. Dr. Albright, the Director of the Division of Diabetes Translation at the Centers for Disease Control and Prevention, has had Type 1 diabetes for more than 40 years and says her philosophy was influenced by her mother, a nurse, who encouraged Ann to experience life to the fullest. These are just a couple of the women whose lives inspire me on a daily basis. Knowing they are out there, struggling with their blood sugars and diabetes care, helps me to keep going, even on the worst days.
2. Translating the language of illness
Accepting illness has a lot to do with being able to communicate. I’ve often asked myself why I have to learn to speak like a medical professional to talk about my disease. If we don’t know how to communicate about diabetes, how can we accept it fully into our lives? The language of illness is often negative and scientific, and as a writer and a woman who searches for the right words every day, I choose to translate negative, ugly words into words that speak my truth. For example:
Instead of following a Diabetes Diet, I call it Healthy Eating.
Instead of using the word Seizure, I say my blood sugar was Low.
Instead of a life filled with Restrictions, I call it a life of Moderation.
Instead of Complications, I take care of myself to avoid future Challenges.
3. Asking for help
I can’t do this alone. For years I kept my illness in the metaphorical closet because I didn’t want to appear weak, needy or different, and I didn’t want to ask for help. Maybe it is my puritanical background or my introverted tendencies; but regardless of the source, I have always struggled to ask for and accept help, especially with diabetes. Being a mother has changed that, and I’ve realized an important lesson for my sons to learn is to know that asking for help is not a sign of weakness, but a sign of knowing your own limitations. I don’t want to do this alone. I want to have my husband, children, friends and extended family there when I need them, so that I can help others in return.
4. I’m no expert
After 26 years of living with diabetes, I’ve realized that I am not an expert, and I’m never going to be. When I was writing my book, one piece of advice almost every woman told me was, “Don’t beat yourself up. Don’t try to be the perfect patient because you’ll just get frustrated.” Diabetes is a very demanding disease with daily opportunities for making mistakes. Perfection is not all it’s cracked up to be, and there is more to life than living in fear of “failure.” Sometimes the biggest mistakes have taught me the most, and accepting that I am not an expert has helped me to embrace the dark side of living with illness.
5. Putting myself first
As a mother to three fabulous boys, this one is the hardest for me to maintain; but it’s also the most important. If I don’t put myself first, I won’t be around to watch my boys grow up. Taking care of me first doesn’t mean I am ignoring the needs of my family but that I am placing value on my health and well-being. As women living with illness, we need to say no We need to tell our children that we will get their glass of milk after we test our blood sugar, we will take them to the park after we’ve done our daily run/walk/swim/yoga, and they will just have to be patient while we chat for a few extra minutes with our doctor. When we ask our children/husbands/jobs/parents/boyfriends, etc. to wait while we attend to our needs, they will be reminded of how much we value ourselves, and they will value us, too.
Create a philosophy to living well with illness, and find role models who will inspire you to keep going, even on the hardest days.