As someone who has lived with type 1 diabetes for more than 40 years, I am no stranger to “diabetes burnout” – that feeling when one grows tired of dealing with diabetes and all that it entails. My good friend, Dr. Bill Polonsky, Ph.D., CDE*, has built a career by immersing himself in the experiences of those who live with diabetes, and wrote a book on diabetes burnout. I recently had an enjoyable conversation with him about his background in health psychology, and his thoughts on coping with diabetes burnout. I’m pleased to share some of that conversation with you today.
With a strong desire to understand emotional life and how the mind contributes to health, Bill began his work in diabetes care at Joslin Diabetes Center. “I knew a little bit about diabetes but really not very much,” he recalled. “I would introduce myself and sit down next to patients in the waiting room and say, ‘Could you tell me a little bit about what living with diabetes is like for you?’ Every person basically had the same response. ‘Thank you. No one’s ever asked me that question before.’ So I listened to people’s stories and I felt very honored to hear what they were struggling with, where they were doing well and what they needed. I’m not so sure I’m doing much differently today. I’m still listening to people’s stories.”
After recognizing a growing need to address the emotional and behavioral aspects of diabetes, Bill co-founded the Behavioral Diabetes Institute (BDI) in 2003. Through the years, BDI has provided support programs and education in diabetes self-management for people living with diabetes and those who support them, as well as training programs for healthcare professionals. They have also conducted research into the psychological aspects of diabetes.
Additionally, BDI is interested in potential disconnects in healthcare relationships. Bill has frequently collaborated with his close colleague, Dr. Steven Edelman and Dr. Edelman’s organization, Taking Control of Your Diabetes, to bring together groups of people living with diabetes and healthcare professionals to discuss issues and uncover misunderstandings from each perspective.
“I think the biggest misunderstanding is that there can be so much blame and shame in diabetes, which we don’t really see in a lot of other diseases,” Bill said. “If someone is not managing diabetes successfully on their own, then there can be an immediate presumption that they are somehow a ‘bad person’—lazy, undisciplined and more. It’s true that this is said about people with type 2 and even sometimes about people with type 1, that somehow they gave themselves diabetes because of their own lack of will-power. And this just isn’t true. It’s about promoting a sense of failure, and it creates a lot of bad vibes.”
These feelings of failure can contribute to diabetes burnout, which Bill sees as different from depression. “Recent work that we’ve done helps us to understand that a lot of what we think of as ‘Oh this person is depressed,’ actually may not be,” he said. “It could be someone who is just sick and tired of living with diabetes. Depression and burnout can overlap because someone who is fed up with diabetes may be at risk for developing a problem with depression.”
Bill offers this differentiation. “There’s this other huge cauldron of problems that are not depression. It’s people who really are just overwhelmed by dealing with their diabetes,” he said. “They could feel frustrated that their own efforts don’t seem to make much of a difference. They could feel hopeless, that terrible things are going to happen to them and they don’t feel that they can avoid it. That’s when we might refer to it as diabetes burnout because at some point some people say, ‘This is just so crazy; I’m trying and trying and it doesn’t seem like I am achieving anything. I might as well just give up.’ You can see how this can happen.”
To help work through diabetes burnout, Bill suggests first addressing feelings of isolation. “Diabetes can be easier to manage effectively when people have somebody in their lives who’s rooting for them,” he said. “That can mean someone who they can talk to about this, who understands and supports them. It could be a family member, or someone who’s a good listener and someone they can complain with and/or share victories with. Or it can mean a healthcare professional who they feel is on their side. It’s about optimizing the support they get for diabetes so they don’t have to feel so alone with it.”
Bill offers another suggestion which is to look for what he calls, “evidence-based hope.” “There is plenty of good scientific data that show us that, with good care and effort, the odds are better and better that people can live a long and healthy life with diabetes,” he said. “It might be obvious to us as healthcare professionals, but to me, we don’t talk about that enough with our patients. Our patients can get so discouraged. I think that this is a critically important message and it is a key way to help people feel better. It can be restorative.”
Finally, Bill believes it can be helpful to assess expectations. “We often help people look at what they think they’re supposed to be doing to manage their diabetes and their expectations about what that is supposed to accomplish,” he said. “As my BDI colleague Dr. Susan Guzman likes to say, ‘What’s a healthy good-enough for you?’ There could be hundreds of tasks that people are asked to do to manage diabetes effectively. No one is going to pull off all of them. What are the biggies? If someone wants to make a difference tomorrow and reach that ‘healthy good-enough,’ they can think about the reasonable steps that are possible for them. Compromise is necessary because no one can do it perfectly. It can be such a relief to recognize that.”
Even though I’ve known Bill for quite some time, I always learn something new when we talk. His insights into the diabetes experience are valuable. He gives me a glimpse of what’s possible and what we can do to help people. My thanks to him for taking the time to share his perspective.
Andreas Stuhr, MD, MBA
Senior Medical Director, US Medical Affairs, Sanofi US Diabetes
Disclosure: William Polonsky received no compensation for this post but has been compensated historically for educational programs on behalf of Sanofi US. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.
*“CDE” is a certification mark owned and registered by the National Certification Board for Diabetes Educators (NCBDE). NCBDE is not affiliated in any way with Sanofi US. NCBDE does not sponsor or endorse any diabetes-related products or services.