Addressing the Emotional Side of Diabetes with Dr. Bill Polonksy
Dr. Bill Polonsky is an associate clinical professor in Medicine at the University of California San Diego, and the president and co-founder of the Behavioral Diabetes Institute. He received his PhD in clinical psychology from Yale University and has served as a senior psychologist at the Joslin Diabetes Center in Boston, faculty member at Harvard Medical School and chairman of the National Certification Board for Diabetes Educators. Dr. Polonsky was one of four featured experts during Beyond Type 1’s #KnowledgeDrop Series, discussing the effect of type 1 diabetes on mental health.
How did you get involved in diabetes and mental health? What is your background?
I’m what’s called a clinical health psychologist. I actually did much of my training up the road at UCSF. And through happenstance I ended up going for an interview at the [Joslin] Diabetes Center in Boston. We started chatting about possibilities that perhaps I could work there… They weren’t quite sure but we kind of hit it off and they said, “Why don’t you come work here for six months and let’s just find out what happens?”
What was it like having not previously worked in the diabetes space?
I still remember my first day of work in 1988 because I had no idea what to do. I didn’t know anything about diabetes. I had read a little bit and seen a couple of people with diabetes but didn’t know anything. So I started walking around the waiting room and introducing myself to people, saying, “Hey, could you tell me what’s living with diabetes like for you?”
And the most remarkable thing happened—The very first person I asked this looked at me and said, “Thank you—no one’s ever asked me that question before.” I thought, “Well, that’s pretty messed up.”
So I just loved what I did and was really just honored how many people were willing to share their stories with me. And we realized there’s a lot of pain out there, there’s a lot of discomfort, there’s a lot of people really struggling. And so that’s what I’ve been doing ever since. I just feel fortunate and lucky and have loved it every single day.
It’s 2019, and I still don’t think I’ve ever been asked a question like that…
No, it is unfortunately still too rare.
Can you talk about the founding of the Behavioral Diabetes Institute?
I moved to San Diego in 1993. 10 years later, I met Dr. Susan Guzman, who had begun working in this field as well. And we wondered, because there was no such thing as the Joslin Diabetes Center in San Diego or any major diabetes center there, how could we bring together all the different things that we were doing and wanted to do—whether it’s training healthcare professionals, seeing folks who are having a tough time, doing research, trying to create a living laboratory—to understand better what’s going on and then create interventions that can make a real difference.
And the Behavioral Diabetes Institute is the result. We say with great pride, and great sadness, that our institute remains, as far as we know, the world’s only nonprofit wholly dedicated to addressing the unmet emotional needs of people with diabetes. The only one? That’s just crazy.
What is it exactly that you’re doing at the BDI?
Well, things have changed over the course of time as we’ve tried to survive as a nonprofit.
For many years was we did a lot of structured group programs. We called our primary program, “Getting on track with your diabetes”—for people who were having a hard time. Just bringing people together for weekend programs or longer term programs, helping them to realize that if they are not taking perfect care of their diabetes that they are not bad people, then problem solving ways to help them feel more successful with their diabetes management without feeling burdened by it. And now, thanks to our collaboration with our friends here at UC San Francisco, we’ve been formalizing all of that work in randomized controlled studies to try and document how programs like these are truly useful (or not), and that work is continuing to this day. We continue to devise and offer other kinds of structured group programs to help folks who are struggling with diabetes, but we do less of that than we used to.
We continue to do more and more research, trying to better understand the behavioral and emotional side of diabetes—both looking at what interventions work as well as to better understand what the critical emotional issues really are. We have completed a number of studies looking at diabetes distress, at worries and fears regarding hypoglycemia, and much more. One further example: We’ve just completed a project looking at Dexcom Share—to explore how people with diabetes and their loved ones are using Share, and whether it is useful or not useful.
For many years we had a lot of fun developing print materials, but that has mostly gone away. We just don’t have any financial support for them anymore. That’s when we started developing the thing that BDI is probably the most well-known for: our diabetes etiquette cards. We developed these because we were doing all these group programs for people who said they were being driven crazy by all the annoying and obnoxious things other people were doing. We said, well, you know, you just can’t punch these people. What do you do? Wouldn’t it be great if you could just politely say to your obnoxious uncle, “Oh, you must not know the rules about how to behave appropriately,” and hand them a diabetes etiquette card. They’re funny, but they’re bring up important points, and the goal is to make it a way of having it be a conversation starter.
We have also began to do a lot more training for healthcare providers because we realized, if there’s only going to be one [BDI] how do we make a difference in a bigger way? How do we help other health care providers to be more successful with their patients? We teach them some of the fundamental methods for appreciating and addressing the emotional side of diabetes, and we are constantly pointing out that you can only be of help to your patient if you work hard to make certain that you and your patient are on the same side.
And are the healthcare providers endocrinologists and primary care physicians that you’re training?
It’s everybody. Nurses, dietitians, pharmacists, social workers, other mental health professionals, everybody.
Can you tell me about any research currently underway, or past research you’ve done that really stands out in your mind?
From a research perspective, probably what we are most well-known for is the work we have done on diabetes burnout and diabetes distress. It was about asking, “How do we develop a questionnaire about diabetes distress, and have that be a conversation starter for healthcare professionals and their patients, but also make that better understood as an important and common phenomenon that is deserving of attention by people with diabetes and their healthcare providers?”
Our research suggests that diabetes distress may be more important, or at least more common, than depression. And that a lot of the previous work and research about depression and diabetes might be not quite right. Often what looks like depression might really be diabetes distress—that what is really bugging people is just feeling overwhelmed and out of control with their diabetes.
When someone’s “numbers” improve, do their levels of diabetes distress go down?
Sometime yes, but sometimes no.
So a person with a relatively healthy A1C of 6% can still experience the same distress as someone whose A1C is 9%?
Oh yes! But they may be distressed about different things. They can still feel like a failure. They can still be struggling with personal issues around diabetes. They can still be frightened to death about hypoglycemia. They could be struggling around food.
And depression is not uncommon. But many people still think if you have someone who’s very depressed and in poor glycemic control, then if we could just fix their depression, their diabetes will get better. And if the person is quite depressed, it is vital that we treat their depression, but this doesn’t typically lead to better blood glucose control. Overcoming depression just may not be enough. We need to also help people to regain a sense of hope that they can do well, to have confidence that they can succeed, and to regain a sense of power and control over their diabetes. But then you may have to do more, like help them to gain the tools and knowledge they need to be successful—perhaps to become loopers, for example—or help them to find a new physician who treats them with kindness and respect .
Has the influx of technology led to more diabetes distress? Less? Do you think it has helped or harmed the emotional health of those living with T1D?
I believe that continuous glucose monitoring (CGM) has the potential to be the most wonderful thing that’s happened to people with type 1 diabetes since 1922. Does getting a CGM make people feel better? Well, we actually had done several studies on this and the answer is, at least to some degree, yes. We’ve published several studies showing that people’s scores on the diabetes distress scale often improve when you can help them to get started on CGM. Of course, this isn’t true for everyone. Diabetes technology has been, and will continue to be, a source of stress for many people with diabetes and their loved ones; much of this has to do with one’s expectations for that technology and with the type of training and support that is being offered. As advances in CGM technology and training continue, I expect that the positive impact on emotional health (especially on alleviating diabetes distress) will grow and grow.
This interview was part of Beyond Type 1’s #KnowledgeDrop Expert Video Series, made possible with support from Lexicon Pharmaceuticals.