Let's Talk about Diabetes with Dr. Bill Polonsky

What's living with diabetes like for you? This is the question Dr. Bill Polonsky asked during his first day on the job at the Joslin Diabetes Center in Boston. The waiting room was full of patients who expressed gratitude for his curiosity. "Thank you," they said. "No one has ever asked me that question before." He continued asking this question for weeks, months and years with the same result. and states the obvious, "I shouldn't be the first person asking that question." On this episode we talk to Bill about the emotional impact of living with diabetes including issues like diabetes distress, the importance of empathy and trust between doctor and patient and the importance of making diabetes technology affordable for everyone.

Featured on this Episode:
Dr. William "Bill" Polonsky is President and Co-Founder of the Behavioral Diabetes Institute, the world’s first organization wholly dedicated to studying and addressing the unmet psychological needs of people with diabetes. He is also Associate Clinical Professor in Medicine at the University of California, San Diego. Dr. Polonsky received his PhD in clinical psychology from Yale University and has served as 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. A licensed clinical psychologist, certified diabetes care and educational specialist, and highly-cited research scientist (with more than 100 peer-reviewed publications in the field of behavioral diabetes), he received the American Diabetes Association’s 2020 Outstanding Educator in Diabetes Award and the American Diabetes Association’s 2014 Richard R. Rubin Award for distinguished contributions tobehavioral medicine and psychology.

Resources for this Episode:
Behavioral diabetes institute: https://behavioraldiabetes.org

Transcript

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Today's guest is Dr. Bill Polonsky, president and founder of the amazing behavioral diabetes Institute. The world's first organization dedicated to studying and addressing the psychological needs of people with diabetes. He's also associate clinical professor in psychiatry at the university of California, San Diego. An active researcher. Bill's most recent projects have focused on quality of life and diabetes, diabetes related, distress and depression. Hypoglycemic fear. Glucose monitoring behavior. And attitudes in people living with diabetes. I think after this conversation, you'll agree that we need more people like How did you get into the diabetes world? How did you get connected with diabetes as a focus of your work? I wish I had some great heartfelt story. My little sister, et cetera. But I don't have any story like that. I was unbelievably lucky by an enormously odd roll, the dice that back in the eighties I stumbled into a job at the Jocelyn Diabetes Center in Boston. And if I remember correctly, they had never hired a psychologist before and they weren't exactly sure if they needed one which was good since I didn't really know too much. And they were kind enough to give me a chance to work there and to learn there. And I, from day one until today, I just feel like I've been incredibly lucky. Just met so many amazing folks and I've learned so much. I continue to no. Great emotional story with close relatives or myself. Unfortunately, I always feel like one down, like I imagine that you have become close to people over your long career that you have seen personally struggling or dealing with various issues. Yeah. In fact, I'm gonna expand on my story if you don't. Of course nowadays I would say a large number of my friends have diabetes, especially type one. But I remember the day I started the, at the Joceline where I didn't have the slightest idea what to do. I was a psychologist, but I really didn't know very much about diabetes. So luckily the Jocelyn was, and I believe still is, it's one of the largest diabetes centers in the world, and they have a really big waiting room and there were a lot of people there, so I. because I was ignorant and didn't know what else. As I just started walking up to people and sitting down and introducing myself and saying Hey, could, if you don't mind, could you tell me what's living with diabetes like for you? And I was so stunned because the first person I asked that question of, I remember she looked at me in surprise and she said, Thank you and. Thank you. She goes no one's ever asked me that question before. And I went that is messed up And then I went to the next person and I asked the same question and she, and he or she, I came remember, said, Thank you. And this went on all day and the following day and for weeks and months. And in fact, nothing's really changed. I still have the chance to ask people, tell me what living diet, what diabetes is like for you. And I continue to learn new things and they continue to thank me. Remains unfortunate. It shouldn't be me being the only person who asked that question, but that's how I got knowledgeable just by opening my ears. One thing that Amy had asked wanted to explore and you've written a lot about, is just the whole idea of diabetes distress, which kind of goes into a lot of the research and work that you've done. And I know we had written in one of our questions about the prevalence of depression and diabetes dis distress. So one thing we wanted to impact too is how are those two things different? I'll tell you, but as long as you're asking me the question and I'm thinking about the Joslyn, I want to go back in time and tell you where that idea came from. The reason we actually even started thinking about diabetes distress and we created the first questionnaire to take a look at that, which these questionnaires are now used everywhere, all over the world is mostly because I was getting very annoyed with all the endocrinologists at the Jocelyn who were really nice folks and really welcoming except they. Referring patients to me, and they all came with the exact same diagnosis. And the diagnosis was, this person is in denial, please help them. And I found it very peculiar because I kept meeting all these people and actually none of them were in denial. And I realized we had to take a look at what was going on, and find a. Better way of creating some language so we could talk about the kinds of struggles and stresses that people were going through beyond using these inaccurate and insulting terms. This person's in denial. So the whole idea of diabetes distress became from my annoyance. And so we've continued to research this over the past more than 25 years now. At least in the samples that we've looked at in the United States, we see that very high, about 40% or so of people with both type one and type two diabetes meet our criteria for having significant levels of high levels of emotional, of diabetes distress in particular. And by the way, that stands in contrast to something like clinical depression, which is less than half. So we know that people going through times where they're feeling fed up, overwhelmed, pissed off, and seriously upset about living with diabetes every day is really common. We've never formally Define the term diabetes burnout. I did in the book I wrote, but Not as clearly from a research perspective as I think we should, but I can tell you that we've always thought of diabetes burnout as simply the extreme version of diabetes distress when people get so distressed and so fed up that they. That's it. And they begin to back off from their diabetes. They begin to back off from as best as they can thinking about it. They begin to back off from the work of the effort you need to manage diabetes every day. And of course that leads to significant trouble. That's how we define them differently. So diabetes stress is the dimension and diabetes burnout is the extreme. And just as far as treatment, I'm just thinking about because I, myself have struggled with depression and diabetes distress and just thinking about when I went to be diagnosed, how would somebody. Figure that out with their doctor, with whoever is making the diagnosis? Would you know, would they have to be super proactive and say, By the way, I've lived with diabetes for so many years and and that needs to be included in portfolio or Yeah. I think any endocrinologist I can think of in the world would probably have a heart attack if someone come in and actually say, I said that But if it's so unlikely, but so for an individual has diabetes, we have a free website now called diabetes distress.org, where you can go in online fill out one of our Diabetes Distress Scale, it'll automatically score. and it'll let you know whether you're have an elevated level of distress. and it'll even tell you what that's about because there's a bunch of subscales. It's pretty primitive. We never really been well funded on this website, so it's not like it gives you any brilliant ideas about how to solve any of these issues. It just brings it up and says, Here's an issue you might wanna talk about with a trusted healthcare provider. I hope when we get better funding, we can. Useful for folks, but it's available for anybody to look at. You asked another, question about how do you distinguish it from depression is that true? And also thinking about treatment. What would somebody just write a prescription for Prozac and say, come back in six weeks? Yeah. Boy, that's a really good question. So we've actually done a fair amount of work and have written a lot. The importance of distinguishing depression. From diabetes distress or diabetes burnout. And we did that for one very particular reason. They're so different that if someone is just fed up and overwhelmed with their diabetes, trust me giving them Prozac, we'll do nothing. So that's the big issue. The concern is, the diagnostic concern is that these problems do overlap and they. Explain it best, just conceptually because of one word, which is powerlessness. that if you think about for you or anyone you know, who's ever been through tough times and got very depressed. The cognitive, the mental core of depression is a feeling of powerlessness. bad things are happening to me, just seems like there's nothing I can do about it. Depression kind of builds from there. in a similar. Diabetes distress is also about powerlessness. But it's about powerlessness about one thing that my diabetes feels outta my control. Despite my best efforts, my blood sugars are crazy. Despite how much I hate this disease, I can't go more than 10 minutes without thinking about it. despite all my efforts, I'm still running into problems. So it's powerlessness, but about something more. and there's no secret pill for the latter. What have you noticed about its evolution as we've developed more tools and sophisticated technologies? Do you feel like distress has changed or do you think it's still there? Let me answer the question I thought you were gonna ask me first. first of all, it is a lot more okay to talk about it. that for the first, I say 10 years talking about diabetes, distress was invisible and no one wasn't really recognized, and at some point within the past 5, 6, 7 years, all of a sudden it was like, Oh, we should all talk. For sometimes obvious reasons that if you really are particularly distressed and overwhelmed by your diabetes, it's gonna get in the way of you being able to be in a safe and healthy place with your diabetes. I think no one's ever asked me that question before. I think certain. Technology has changed it. It's, and I'll tell you the changes I see. What hasn't changed is the two most common things. Anybody with Type one diabetes will tell you that's driving them crazy. It, And I'll ask you to tell me if I'm, if you think this is true. It, one is what we call the twenty four seven problem. Feeling like I just never get a break. And the other one being the aggravation, that I did everything perfectly today and I'm still getting wacky results. You gotta be freaking kidding me that diabetes doesn't play nice sometimes and doesn't cooperate. You don't hear that as much from people with type two, but. Sort of the number one and number two that most people with type one would say there's a long list, but those are usually the top of the list. And for people with type two, I think we've become more aware and what's become more obvious, is concerns about stigma and the shame and blame with type two. So there's been more recognition about that. And I think there's also been much more recognition, and this has only been in the past few years, that one of the biggest contributors to diabetes distress for people with type two diabetes, is poverty. If you don't have the resources, To manage diabetes. You live in a food desert. If you can't get insurance, you can't afford your insulin. We, nowadays the popular term is, social determinants of health, which is mouthful. I think we have to come up with some better way of talking about it, but We see type two diabetes skewing more towards a lower socioeconomic status. I think we feel so hopeless about that. We don't pay enough attention to it. So to me those are pretty different as me in six months, I could probably a lot tell you a lot more about with change. We just started a new type two diabetes distress scale that we've published a little bit about on, so we're gathering more information right now. Who do you send? Or do you target, are you, cuz often there are people that I see that are very motivated doing well. I often see them, once or twice a year. And then there's people that I wish I could. Every week because they're just struggling so much and I don't know if a distress scale would help. It may be helpful just to identify and name what it is that they're experiencing. Yeah, to me the equivalent is when, one of the reasons we really developed this scale is because what we are still hoping is that every healthcare provider in America works with people with diabetes will at least once a year, look their patient in the eye and say, Can you tell me one thing about diabetes that's driving you crazy. Yes. Yeah. And the whole purpose of this questionnaire is to make that a little easier, but I'd rather you forget the questionnaire and just ask that one question.. It's just, and it's being respectful to your patient. It's acknowledging because of the way I just. That very likely there is something driving you crazy. By talking about it, maybe we'll be able to solve a problem that we didn't even know with standing in the way. Like why is this person solve an A1C of 9%? Why is nothing changing? Yeah. And I think that one question if you, we listen to the answer is the way to go. Tell me one thing about diabetes that's driving you. So the diabetes dress scale is simply a way to do that, it is a conversation starter. Wow. I noticed you really scored high on items one and two. Geez. Something like something's really bugging you. Can you tell me more about that? What is it gonna take? How can, what can we do to spread that message of what you're saying? of all you have to do is sit down once a year, at least once a year, and look your patient in the eye and say, What's driving you crazy? That doesn't cost any money. think my impression has been the fear is that it will cost money, for the healthcare provider. Really like it is opening Pandora's box. We know that most, not most, many healthcare systems, many of which I still work with, for example wouldn't even bother having their patients fill out a depression questionnaire. And it's not because they aren't worried that someone might be depressed, but because they have no idea what to do with that. If someone scores high a, it's, I'm gonna have to deal with this, which take time. I'm gonna have to find someone to refer them to and I don't know anybody and I'm gonna have to figure out what to say and I don't know what to say. So it just gets magnified with, when you talk about diabetes distress, I think many healthcare provider. aren't quite sure about how to respond because the sense is like, Oh my God, I've gotta fix this right now. And the bigger concern, and of course I see Liz nodding is that this is gonna take time. How on freaking earth, do you expect me to find any extra time to deal with. There was another study published just a couple years ago in the uk where they looked at 860 people with type two. All of whom have been diagnosed about a year ago. And they asked them to fill a little questionnaire. It was a 10 item questionnaire called Care Questionnaire about, So what do you think of your healthcare provider and how you've been treated since you developed diabetes? And this questionnaire was really about empathy. Do you feel like you're treated like a whole person? Do you feel like your healthcare provider listens to you? And then you could summarize that and have a total score based on how people responded on a zero to 10 score in each of these 10 items. Simple. But then this is what they did. Oh, I love this study so much. Then they followed this people for 10 years and the question they asked, Is there anything about how people felt about their relationship with their healthcare provider in a sense that their healthcare provider was on their side, had some empathy and trust and how well that individual was doing 10 years later. They looked at a number of important health outcomes. The most important one, I think it's the most important one there is was death. And what they found is those people who scored higher on that questio. Scored their healthcare provider higher, their relationship higher, they were way more likely to still be alive. In fact high score high scores were, you're about a, you saw about a 40, 30 to 40% drop in mortality over 10 years. Wow. Cause mortality. Crazy numbers. So what the hell's happening? I just have to be pleasant with my patients. What that means, the message we can give to healthcare providers. It's not that you have to be particularly incredibly warm and em. it's just don't be an asshole. So maybe that's the message we just need to give Just pretend to care about your patients as well as you can, ill say, just in, in the defense of my, he. Further in yeah. The stress that healthcare providers are under these days the demands on your time. Yeah. It's no wonder so many people are not their best selves. There's so much, I'm on these different groups now and provider wellness and all this kind of stuff, and there's just a lot of energy about how to bring joy back to medicine because it has become so demoralizing because it's, there's just so much to do. There's just stuff coming at you all the time. I think systemically something's gotta change in order for people to come back to medicine. In a way that they can, that they want to, that they came into it for the first place. And did it cause they wanted to do more MyChart messages or Right. form. I didn't do it for that reason. And you're right. So I shouldn't have said, don't be an asshole. So cavalierly because that's true. Most healthcare providers I know would prefer to be able to hang out and care more and really do the job they've always wanted to do. And they've just been thrown into this horrible factory farm existence. Yeah, it's really hard where there's no time to do anything and it squeezes a life out of folks. And so we know that burn burnout, back to burnout is as unbelievably high, in physicians in particular. But I do think there's small things that we can take away from what you're saying, which is something I always lead with when I walk in the room. It's like, how are you and what's going on? It's like I try to start conversations with that. How's your summer been? Tell me a little bit, just to not jump into the medical issues right away. Treating your patients. They're not a number, they're a person, right? Yeah. I How wonderful. I think we need a better job of finding perhaps people like you, Liz, who have figured out a way to. Mitch, the incredibly insane squeeze of my job. How am I remaining a human being, right? how am I trying to have some sort of real respectful, emotional connection with my patients that doesn't bankrupt me? Yeah, no, there's group medical appointments. We see that as one way in which that's working. We have seen, we have lots of stories about other people in other countries have figured out, really clever ways to do this. That our healthcare provider colleagues have figured out that we should be learning from them. Because you'd think that it would go hand in hand to a certain degree. Like Liz, if you're feeling burned out, you're tired of filling out the forms and not having enough time and all of these different issues, but if you were able to like you, Ask them how their summer was and ha start off like that in, in your appointments, like eventually after time. Wouldn't you think that would benefit both the doctor and the patient? Yeah, maybe not immediately but to reduce burnout on both sides because the doctor would feel a little more connected to the person. To be fair to what Liz is saying though and Liz, maybe you figure this out, for many healthcare providers who are profoundly overwhelmed, even that question though raises the fear opening Pandora's box. If I ask this person how they are, what if they tell me everything? which is why I go back to my question, Mrs. Smith, nice to see you. Can you. One thing about diabetes is driving you crazy. Not everything Yeah. But it's, that's often the fear. It's what do I do if someone really says, Oh, you wanna how I am? I'll tell you. Cause people there are so much suffering right now, or, Yeah. Yeah. So just to shift gears, what's something that you're hopeful about, Bill? What's something you're excited about with bdi or what's going on in the diabetes community or something you're feeling. Optimistic about, lemme see the obvious things that you know, so well. I'm super excited about hybrid closed loop pumps and what's gonna follow after that. And as we move towards words beyond hybrid closed loop pump so that you don't have to do even meal alerts. To me that's just been miraculous. And as we're, as we're gonna see CGMs getting smaller and even more accurate. I You've lived it, right? The changes that we've seen in the past, what, five years as we have functional, trustworthy CGMs. I It's. That's changed. Freaking everything. I don't know. I'm so excited about what's going on now in type one. I don't even know where to go after that so I'm talking about the emotional stuff yet. But just that is an emotional thing. I Cuz we've published a bunch of stuff just on how all that technology, how that is having a huge, enormous, reducing emotional stress, helping people to sleep better, feel better, feel more hopeful about the future. So I'm not answering your question cause I'm talking about what's available now and not talking about my elm realm of area. What type two, Of course, how can one not be unbelievably excited, but down the road to actually that we can actually help people with viewer and fewer hassles and complications and side effects, achieve success with type two diabetes and manage their weight. Holy moly. That's amazing. It's just extraordinary. Now we have to do is make it affordable. Exactly. I was just gonna say stuff, but yeah, the lengths we have to go to, to get those for people sometimes, Oh my god, God, it's a nightmare, right? Yeah, it's a nightmare. But I didn't really answer your question because that's what I think about, I excited about, when I think about like at the broad world that's happening right now, where in the midst. Awesome stuff. It's so wonderful if it's affordable. Oh, new stuff every day. You kidding? So we just finished a pilot study where we're trying to reinvent Type two Diabetes education. Because if there's one thing we know about diabetes education programs, usually the group programs, often multi-session programs, they have shown, supposed seemingly some success with people really benefiting. But my god, they're boring. And and the little bit of evidence we have suggests most people never even finish these programs. They just drop out probably because it's so freaking boring. So we don't understand why in a world where we have CGM. You would ever have to show anybody pictures of plastic food again. Oh my God, they're not still doing that. What would you have to do? Why would you ever have give anybody a lecture about diabetes? Why? So we do a little pilot and says what if you just give every newly diagnosed person a cgm and you still have group meetings? But those meetings are about what'd you discover this week? Or, Let's set up some little home experiments so you can find out what. I'm not, I don't have to give you a lecture about exercise. You got, you're wearing this thing, go for a walk, come back, let me know what happens. do it every day for a week. You wanna know about carbohydrates, fine. What are you having for breakfast tomorrow morning? try something different. These are things we see all the time. We know that CGM is typically not affordable for people who are not on insulin yet, so we're trying to open up that. And so our pilot was amazingly successful and now we're hopefully gonna get support to do a more formal randomized control trial to test that out. So to me it's things like that, like we should, anything we can do that can make diabetes more engaging as opposed. A chore. Especially for people, I think, I always think a lot about the newly diagnosed type twos. We have a real opportunity there not to make things. More boring and off putting folks. Yeah. So we, I thought that was a really cool little study. I was very excited about that. So hopefully these kinds of studies will make it easier for insurance to cover things like that. And systematically too, it'd be great to even incorporate more into the primary care community. Cause I do think a lot of providers are really uncomfortable with, just aren't familiar with a lot of this technology and people come in with all this data and it's it's like that Pandora's box. It's a lot to process in a 20 minute visit. Yeah. It's probably impossible. How do you help. primary care providers, for example, look at a clarity chart,. Or a Libra view chart and go, What is this? And. Such huge opportunity. Helping make the invisible visible. As we move away from A1C to time and range. there's a really powerful message in that, which is that, all people always feel like, my A1C is my. I'm gonna go see my doctor, I'm gonna get graded. Time and range, you can tell subtly changes that, right? I like to tell people like, the goal, time and range goal is 70%. That means you're outta range six hours a day. Have fun, within limits. But I. I still remember when I first heard that Oh, yeah, how to range six hours a day. So we're making things more possible for folks. You, the message we've given forever is you don't have to manage diabetes perfectly. You can't anyway. And you don't need to. So I love that. That's so great. I'm so grateful that you're still doing all this important work that you're still just advocating for our community. I really appreciate that. Yes, me too. I feel lucky every day doing this. I can't imagine why I would ever do anything different, and just trying to figure out how we can be of more help and make a difference with folks helps. Makes me wanna get up in the morning. But thank you. Thank you for listening to this episode of embracing diabetes with today's guest, bill Polonsky, we hope you enjoyed the conversation. And maybe felt inspired or informed or less alone or all of the above. Please subscribe to embrace and diabetes on all major podcast platforms. And leave a comment question or review. Thanks again. We hope you'll come back for more conversations about diabetes.