Stories of Living with Diabetes
Forty patients—all with different circumstances, backgrounds and treatments each have one common story to tell: living with diabetes.
Co-authors Alan Graber, M.D., Anne Brown, R.N., M.S.N., and Kathleen Wolfe, R.N., M.S.N., compiled these compelling patient stories in their new book “A Life of Control: Stories of Living with Diabetes,” published by Vanderbilt University Press.
“Our hope is that the millions of people who don’t have diabetes, but have family, friends, or co-workers affected by it and don’t understand what it’s like to live with diabetes, will have a renewed appreciation on how challenging it is to manage it well,” Wolfe said.
The book contains personal narratives, based on taped interviews from the perspective of the patient, spouse, parent or child. It highlights living with diabetes from many different angles: various types, coping, severities, as well as looking at the complexity and the challenges of living with the disease. The chapters organize the stories around topics such as the role of family and diabetes, the social context of control, and the clinician and patient.
Brown and Wolfe first began job sharing in 1982, working with Graber. The authors spent 25 years working together as an endocrinologist and two nurse practitioners treating diabetes patients.
In 1986, while in private practice, the authors organized one of the first outpatient American Diabetes Association-recognized patient education programs in the country. They later worked together for many years at the Vanderbilt Eskind Diabetes Center. In 2006, Graber first introduced the thought of the book and they began meeting weekly to toss around ideas.
The project was initially meant to be a book on patient scenarios but quickly changed to become a compilation of stories to give a voice to people who have lived with diabetes.
“We identified a patient that we thought had an interesting story.” Wolfe said.
“This book is a quality product written by a wonderful group of people who have been here over a decade,” said Tom Elasy, M.D., medical director of Vanderbilt Eskind Diabetes Clinic. “As a clinician, I love how it reminds me of the importance of [the idea that] the first principle is the actual person, and the second principle is they have diabetes. The ability to enter into their story and appreciate the context of where they come from is part of the richness of caring for people.”
Health care students can also benefit from the book. Although not meant to be a textbook or a how-to guide, it contains a list of references, a glossary and explanations of medical jargon and terms. Students in training can easily develop a compassion for diabetes patients through the stories of their journey with the disease.
Brown says the stories are informative for all.
“We hope patients see they are not the only ones struggling and they can take some comfort from people in the book and even get a few laughs,” she said. “It is also for people to read that do not have diabetes. The general public doesn’t understand the process diabetes patients go through to be normal. We wanted to help give a voice to some of the people with diabetes so the people without it can know what the patients go through day in and out.”
Elasy notes that several stories in the book give the reader an insight into the importance of family and community.
“In the Eskind Diabetes Clinic, we have accelerated personalized approach in the midst of caring for a population, because we consider how to care for a population and individual personalized care simultaneously,” he said. “We are focused on how to improve on personalized care and this book helps with the individualized piece. We place a tremendous emphasis on improving both.”
Both Brown and Wolfe are currently heavily involved in diabetes clinical research, teaching, and patient care in the Eskind Diabetes Clinic. Graber has now retired, although he continues to actively participate in diabetes activities.
“A Life of Control: Stories of Living with Diabetes” is available at Vanderbilt University Press, Amazon, and Middle Tennessee bookstores.
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