Living with diabetes is a long road. It can take you to scary, difficult, and painful places, but it also teaches valuable lessons. Some think it also brings rewards.
I explored the diabetes journey with Emily Coles, who has lived with diabetes since the age of 3. She is now 40 and is Head of Communities at the Diabetes Hands Foundation. I asked her about the changes diabetes has brought to her life. Like all our stories, hers is unique, but you will probably recognize some of it.
“It has truly been a journey,” she said. “I can look back and see how my approach has changed over the years. My priorities have changed. Other things — friends, job, relationships — have to go on the priority list. I’m more balanced now than I used to be. Calmer and better.”
Emily recognizes the need for good glucose control, but says that can’t be her whole life. “One thing I have learned is my psychological health is a greater factor in my quality of life than my physical health. I can be flourishing in life even if I don’t feel perfect. But I can’t be active and flourishing if I’m depressed or upset.”
She still tries to get the best possible numbers, “but I’m not trying to get perfect numbers. I let go of perfectionism. Perfection is unattainable; improvement is attainable.”
Unlearning perfectionism is one of several important lessons diabetes has helped Emily learn. Some others: “I appreciate the health and abilities I have. I think most of my friends take their health for granted. I have better perspective on what’s important. I have peers who can be thrown for a loop by things that don’t seem important to me, a fender bender or something. Stuff goes wrong sometimes, but diabetes gives me a different perspective. A lot of things are not worth being upset about.”
Her journey has had some hard stretches, swamps of depression where happiness seemed far away. “I’ve had times where I was barely able to function,” she says. “It was sadness and fury most of the time. I was not able to accept comfort or help from the people who love me. Those were hard places, but I came out of them.”
Emily has been lucky in many ways. She says she doesn’t really fear complications, because she’s never had any. She’s physically active as a competitive dancer. She has adventures — she was heading to Paris when I spoke with her and had just returned from a diabetes conference in New Orleans.
She doesn’t let diabetes hold her back. “Five years ago, I did a six-week volunteer stint on a game reserve in Africa,” she said. “Lions, giraffes, they had even imported some tigers. That was great. Nobody knew anything about diabetes. I was on my own as far as managing it and I was fine.”
Emily’s parents helped her become self-confident about her management as a child. “My parents never questioned or caused me to doubt that I could do what I wanted to do,” she says. If I wanted to go camping with my friends, they said ‘make sure you’ve got all your stuff, and go.’ They didn’t hold me back.”
Our unique journeys
Everyone has his own path with diabetes. A Type 2 path that started at age 50 might be different from that of a person like Emily who has had Type 1 as long as she can remember. Diabetes is just one part of a larger journey called life.
What has your journey been like so far? What have you learned from it? What have been the hardest times and the greatest rewards?
One thing that makes a difference is having people to share the journey with. Being alone with your problems can be tough. Emily told me, “I didn’t know others with diabetes until a few years ago, I had family and friends to share the journey with, but they weren’t on it themselves. I didn’t know other kids with diabetes; I was always the only person in the room having this particular experience.”
Connecting with the Diabetes Hands Foundation has changed her life. “I realized that it is really valuable to have people to share the experience who are going through it too,” she said. “There are inside jokes, there are references you can make, other people understand what you’re saying, and that’s awesome. I feel some cultural pride to be part of this wonderful group of people with diabetes.”
Thinking of life as a journey helps me put things in perspective. In this world, everything changes. I need to grow and change with it. Looking at it that way, life rarely gets boring. There’s another adventure around the next curve, new things to learn, ways to get better. The road goes on whether we want it to or not, so we might as well enjoy the trip.
The waiting is the hardest part when it comes to a diabetes cure, but if anyone knows how to deal with a difficult situation, it’s a Diabetian, says Scott Coulter. Bookmark DiabetesSelfManagement.com and tune in tomorrow to read more.