The daily demands of diabetes can take an emotional toll. In this episode of Diabetes Care Conversations, Dr. Tracey Long explores how diabetes burnout and distress can affect people with diabetes and shares practical ways diabetes care and education specialists can recognize the signs, reduce the burden and provide meaningful support.
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Vandana Sheth
What happens when the daily demands of diabetes management begin to feel overwhelming? For many people living with diabetes, the constant decisions, monitoring, appointments, medication adjustments, food choices, and self-care responsibilities can become emotionally exhausting. And over time, that can lead to diabetes burnout or diabetes distress. And it can affect both emotional well being and diabetes outcomes. As diabetes care and education specialists, understanding how to recognize and address burnout is an important part of providing person-centered care. Welcome to the ADCES podcast, Diabetes Care Conversations. I'm your host, Vandana Sheth, and today we are discussing diabetes burnout, what it is, what it looks like, what contributes to it and how diabetes care and education specialists can help people with diabetes navigate these challenges.
Joining us today is Tracy Long. Tracy is a nurse practitioner, diabetes care and education specialist, educator, university professor of nursing, and nationally recognized speaker with extensive experience supporting people living with diabetes. Tracy, welcome. We are so glad you're here.
Before we dive in, can you please introduce yourself, share a bit about your background, tell us what drew you to this topic.
Tracey Long
Thank you so much. So I'm Dr. Tracy Long. She already mentioned I'm a nurse practitioner and my specialty has been in endocrinology. I've been a certified diabetes educator 25 plus years ago. And now, because of the name change, we are now certified diabetes care and education specialists. I've even taught and still do teach a prep course to become a CDCES, I'm the old generation that still struggles with those that acronym. But anyway, in the world of diabetes, you know, sometimes I joke and I say we have job security because of the statistics of those with diabetes, prediabetes, metabolic syndrome. And the bottom line is people need you. If you're a diabetes care and education specialist, you are so important and so needed. Hopefully the things that we're going to share are going to bring some insights for you in how you can approach your clients and people with diabetes. So I personally don't have diabetes, but I had a grandfather who had diabetes and I remember after an amputation watching him stumble and fall and seeing that scary side of diabetes. Otherwise, but I remember the first time wow, 20, 15 years ago, when I tried my very first CGM. And at first it was a very exciting little toy. This was back when I had to calibrate it still with blood finger sticks. After literally 24 hours, the fun wore off. And I'm like, man, I got to calibrate again. Man, look at what this is doing. And look, I gotta be careful about this. And it was the very beginning empathy of wow, even though we have this beautiful technology.
This requires a lot of emotional energy. By the end of the 10-day trial, I was like, this is a lot, which was a great experience. So if you, as a diabetes care and education specialist, have never had the experience of wearing a CGM, please make sure that's something that you do, because that gives you a tiny little glimpse into the world of requirement.
For emotional energy and caring for blood sugar levels, and as was mentioned, all the components of managing a chronic condition.
Vandana Sheth
Thanks, Tracy. I really appreciate you sharing that. So we hear the word burnout a lot. So when it comes to diabetes, what does burnout or diabetes distress look like in the day-to-day life of someone living with diabetes?
Tracey Long
The World Health Organization has actually defined burnout because a little bit pre, definitely post COVID, burnout was the buzzword. And it was affecting healthcare professionals. And that was where the approach first came with World Health Organization. And then now to clients, people who are living with chronic conditions. So here was their definition burnout is physical and psychological weariness, fatigue, cynicism, and exhaustion. So what was interesting in the healthcare professional burnout, it became where the provider or the healthcare professional was becoming cynical and patients were just a number again. And we just kind of robotically moved through the motions. And then when we applied that to the actual person themselves.
That is relevant as well because they not only are physically and emotionally exhausted, but it affects their whole energy tank. They can become cynical towards life where they lose hope. It doesn't matter anymore. And that impacts every aspect of their life, their professional life, their relationships, because that exhaustion and weariness, it takes the air out of the balloon of life that would lift them to do daily activities. And so without that air in the balloon, they feel deflated and really lose hope. And with that come those symptoms of they stop monitoring blood sugars, maybe they miss appointments, they stop taking whatever combination of medications they may be on, etc. And that then brings on additional physical problems and the cycle repeats itself as well. So they're just feeling overwhelmed, discouraged, and then that slides them into depression, which is already a risk factor for those with diabetes. We know that people with diabetes are three times greater risk of depression than the general population. When we look at all statistics for people with diabetes, we're often thinking about, well, they're double the risk of retinopathy and they're four times the risk of cardiovascular events and renal problems. But depression itself is very real as part of their lived experience. And so that I think that's really valuable to know and recognize. And then compounding all of that are these additional emotions of shame and guilt. We don't need that.
And so that's just all part of that whole package. One simple, obvious story that depicts diabetes distress, which has led to burnout, was a teenage girl. Well, she was really in her young 20s, where she's now left the home. She's in college. She is so exhausted of having to deal with diabetes. She of course had in her home with her parents, her mother on her back.
Always telling her, now we gotta do this, gotta do that, that, that. And now she's off to college feeling the freedom, right? That many of us felt when we first went off to college. But then now does not have that parent voice and just stopped taking her insulin. She also had that additional interesting strategy that if she didn't take her insulin and she was type one, that she wouldn't gain weight, right? Because that freshman 10 was very real. So of course, the story ending is obvious. She ends up in the ER in a DKA because she now has not been taking the insulin. She just doesn't want to deal with it anymore. And so that took quite a while to get her physically back, metabolism, electrolytes, and fluids all balanced again. And it was an interesting wake-up call for her that this was her body, not her parents, and she was responsible. So, the good news about that is she leveled up, she became accountable. It took a while, lots of visits, for her to learn some strategies to get over putting her head in the sand and hoping it just disappeared. Wow. And the good news is following her into her later twenties, then she's thriving with diabetes. But it was some hurdles and bumps in the road.
Vandana Sheth
I so appreciate that story because that really brings to light this important point that diabetes burnout is so much more than just simply feeling tired of diabetes. It can be that emotional exhaustion that comes from managing a disease that truly never takes a day off. I think what you said is such a helpful reminder for all of us as clinicians, burnout may not always look like someone not caring. Sometimes it may actually come from caring deeply.
Trying so hard and feeling like nothing is ever enough. For diabetes care and education specialists listening, this shift matters. And instead of asking, why isn't this person following the plan, we can begin asking, what's making this so difficult right now? So, Tracy, when you think about the underlying factors that contribute to burnout or diabetes distress, what are some of the things that we need to pay closer attention to and what might we miss when we just focus on A1C, time and range, weight, or other outcomes?
Tracey Long
One overall tip on that is when we think about managing diabetes, the pancreas is not managing diabetes, it's the person managing diabetes because it's a person, we come with flaws and emotions and different energies every day. And so one tip for us diabetes care and education specialists is to remember it's the person and not just the condition that we're trying to assist. Another strategy in our approach is stop trying to fix the diabetes and fix the person. Sometimes even the vocabulary that we use matters. When we call them a patient, the implication is they're sick and ill. When we say you're a diabetic, that defines them.
It was years ago, the editor of diabetes magazine, the ADA forecast magazine. He had type one diabetes and he says, Don't call me a diabetic. I am a person with diabetes, but I'm also a father, and I'm also a husband and a son and a cousin and all these different things that were components of him. And I really loved that. And now that literally has become part of the ADA standards, are these changes in how we even address a person with diabetes. So factors that can compound diabetes distress may be using the wrong words. The illness, the patient, the diabetic, noncompliance. I really don't like that word because noncompliance implies they're not doing what I said, right? Instead of they have their choice. And it's really a mind shift to portray ourselves as we're the coach. We're the coach on the side. They're the one running the race. We have ideas, we have education, suggestions as for prescribers, we have prescriptions, right? Medications to help with all that management. But in saying, well, you're non-compliant, takes away their autonomy, their judgment, their responsibility and accountability, and their freedom to choose. So I think those things can compact and make worse diabetes distress. So that's one extra thought. Another thought is what else do we need to consider in addition to just an A1C? You know, there's been so much emphasis on that A1C. And ADA, in their 2024 definition of diabetes, said that it is beyond just glycemic control that we as clinicians, prescribers, should be looking at some of the other very key markers like homocysteine, C reactive peptide, yes, their lipids, yes, renal function, that are all part of the whole body, not just that glucose. When we look at and manage metabolic syndromes and diabetes falls in that, there are so many other physiological conditions that need to be monitored. But the bottom line is looking at that person in a holistic approach, which includes not just the physical, but the psychological, which includes the emotional, mental, financial, social components, and even dare I say spiritual components that make someone whole. And a strategy is picture a round circle, whether it's a wheel and then you divide that wheel into half and then half again and then more spokes on a wheel. And inside those eight little pie slices are the different components that make you you spiritual, physical, emotional, professional, economical, all of that, right? So, yes, as medical clinicians, we're looking at the physical. But really, we have to recognize the impact of the emotional, mental, psychological, spiritual components, which is what we're talking about. You know, when you have not felt good, your energy wanes, and that impacts so much internally. There are so many interesting studies that show the impact of emotional state on physiological functions. It's just true.
Vandana Sheth
What you shared is such a helpful reminder. Those markers give us useful information, but they don't tell us the whole story. They don't tell us what someone is juggling at home, what their sleep has been like, how stressed they feel, whether they feel supported, what financial pressures they may be facing, or whether diabetes has started to feel like one more thing they cannot keep up with. So as clinicians, it can be so easy to move quickly into problem solving, but sometimes we need to pause and ask better questions first. So let's talk about that. How can diabetes care and education specialists recognize when someone is experiencing burnout or diabetes distress, especially when people don't come right out and say, I'm struggling?
Tracey Long
It has all to do with asking good and better questions. Here's an example. I had a person with diabetes who called and said, I think I'm having a panic attack, which is highly possible, right? And so I'm asking about, well, let's see, in your history, do we have anxiety? I'm asking those kind of physical questions. And then finally I kind of thought outside the box and I said, What's your caffeine intake? And she admitted that she had this extra opportunity to get free sodas at this one facility that was giving free sodas, you know, for the month or whatever. And she was having three a day. It was caffeine. And if I didn't ask the right questions, I would have been giving her, you know, Ada Van instead of a lecture on let's decrease the caffeine in your life. So learning how to ask better questions. Here's some ideas. Here's some tips to go along with that story. yes, we ask about what show we maybe we're pulling reports from a CGM and what's your time and range, and how often have you had lows, and how are you treating the lows? And you know, we're asking those appropriate questions. But I like the question to say at every visit, what is the hardest thing you're dealing with right now with your diabetes? Pause, let them fill in the blank. That gives them an opportunity to disclose. Another phrase I really like, and we use this when we're actually exploring erectile dysfunction instead of coming straight out and saying, well, how's life in the bedroom? But phrasing it to say, you know, many people with diabetes experience erectile dysfunction, or in this topic, experience diabetes distress and burnout. How has it been for you?
I like the phrasing of that question because the first part of it normalizes the issue. They're like, other people have this problem? Because remember, if I say many people with diabetes experience fill in the blank, whatever the problem is, right? How is this for you? So they hear, I'm not alone. Other people are experiencing this. And then there's that open door, open-ended question for them to share.
We can recognize some signs of diabetes, distress, and burnout again through their behaviors, dropping appointments, not responding, maybe not uploading the CGM, all of those kind of mechanical issues. But if they're not sharing that, I highly encourage you to include that kind of a question at every visit, however often you get to visit with them. Now, they're probably seeing a primary care provider, maybe they're into chronologists more regularly than they get to see you.
Often as a diabetes care and education specialist, we see them maybe for the 12 hour Medicare block of education they get when they're first diagnosed, you know, and then never again. And so that's kind of rare. But if that becomes part of your initial intake when you're doing a comprehensive avowal to see where they are, I highly encourage that question to be asked.
Vandana Sheth
I love that idea of normalizing the conversation, something as simple as, you know, many people, like you use that word, many people with diabetes feel frustrated or lonely or overwhelmed at times. How has it been lately for you? Or that can feel very differently than immediately reviewing numbers or pointing out things that need to change. Are there certain words or behaviors or patterns that make you think this person may be experiencing more distress than they are saying out loud?
Tracey Long
Yes, another tool is using the wheel of life. Remember that circle and all those different segments. If you teach them, even at that first and maybe one and only visit, picture that wheel. We call it the wheel of light. If the inner center of that wheel represents a zero, and then the 10 is the outside rim of that wheel, in each little segment on a scale from zero to ten, how would you rate yourself? So you could ask them, how are you rating yourself physically? Zero to 10, 10 being, I feel great. And then maybe even, and I do, draw it out, print it out, and I even have a handout to make it go quicker. Now do a dot to dot of all those little bullets that you put in each one of those spikes. And if you see the zigzag, zig zag, that's a bumpy wheel. Can you imagine riding in a vehicle supported by that wheel?
And so sometimes even having them see that validates that's why they feel so lousy. Look how uneven that is. That's a bumpy ride through life. Let's talk about it. And then you could say, which area do you want to focus on? One area, one activity that can improve your feeling in control with your diabetes. And maybe they said, well, I feel like I'm a four. Okay, what would it take to get you to a five?
And they actually are the ones that know already. I know I should be exercising. Well tell me about it. Right. And so by me us learning to ask the right questions and let them have self discovery, they get the buy-in because it was their idea, right?
Vandana Sheth
is so practical and I think it also speaks to the importance of creating a safe, judgment free space. If people feel judged, they may shut down. But if they feel seen and heard, they may be more willing to tell us what's really going on. So how do you distinguish between diabetes burnout from disengagement, depression, or simply having completing life priorities?
Tracey Long
It's really semantics and verbiage. So are we gonna call it distress or depression? Well, depression, that's a distress in my book, right? Or disengagement, why are you disengaged? Because you're depressed. So sometimes it becomes just semantics. Let's just call it you're not functioning at your ten out of ten in all those categories. And so how do we identify it? Hopefully by having those correct questions, being a trusted partner where they can feel safe to disclose. And where you even define your role, I'm your coach. I am not the pancreas policeman, right? And sometimes when they feel that shift in your role and your approach, they will share. They'll be like, yeah, I'm not feeling good. Well, tell me about it instead of what we tend to do even as parents, jump right into lecture mode because we know the answers. Research tells us the solutions and strategies.
All of those great studies that are done with medications via pharmaceuticals or guidelines, which are evidence-based, we've got answers and we so much want to just give it to them. And yet we need to guide them again towards that self-discovery of what could they do. Part of that also includes motivational interviewing, learning how to find out through good open-ended questions what's their motivation.
What makes the difference for you? What helps energize you? What gets you out of bed? I really want to see my grandson's high school or college graduation. I wanna be there for that wedding. Awesome. What's one thing you could do this week, this month, that can move you from that three to a four or a six to a seven, one, just one activity. And again, you're trying to pull it out of them. Sometimes if they have like nothing, then you could say,
I have some ideas. Are you open to listening to some ideas? And often they'll be like, yeah. And then you can share your wealth of information.
Vandana Sheth
So how can DCS help people lower that burden or focus on small realistic steps?
Tracey Long
We have a gift for you, the listener. So you have a worksheet tool, and I call it the lift strategy or the lift method. And our role as a CDCES is to help lift them to be able to help manage, control their own diabetes. It's their body. So what is our role? So that the lifting then is listening and validating the I is identifying and screening. Have we now fallen into maladaptive behaviors where they really do need maybe a formal prescription for an antidepressant or additional counseling, right? So that's the identifying, have they crossed that line and now we need to screen and then refer? The F is finding those small solutions and the T is transfer to mental health care or professionals if it's needed. So you've got that.
Cool. It will be in the show notes. You are welcome to grab that ticket. You also are gonna be getting a PDF of the PowerPoint presentation that I did on the 2025 ADCES conference. So if you weren't able to attend that live or you wanna have let's do it again, I have tons more information.
Vandana Sheth
That is that's a wonderful resource. Thank you, Tracy. And that clear framework. I appreciate that it starts with listening and validation and not education. Education is important, of course, but if someone is burned out, they may not be ready to take in more information until they feel understood. And as we start to wrap up, I want to bring this back to diabetes care and education specialists listening. If you could give them one practical takeaway for supporting people through diabetes burnout or distress. What would it be?
Tracey Long
Well, my quick little story was I was teaching a class of newly diagnosed people with diabetes and it was heavy and there's a lot and you could see that distress already starting. Then at the very end, this one woman raised her hand and she goes, Diabetes is like the best thing ever. And of course, everybody in the room wanted to kill her. Like how how in the world can you say something like that? And she says, No, hear me out. Now I have a diagnosis of a chronic condition, which gives me permission to put me and my body in high top priority. And I love that complete shift, which is a similar paradigm shift we need to make as a CDCES, where our role is to help empower and lift them to continue to deal and manage a chronic condition because it's doable, right?
Vandana Sheth
Yeah, I love that because at the heart of this work, we're not just helping people manage glucose values. We are helping people feel supported, capable, and less alone as they live with diabetes every day. So, Tracy, thank you so much for joining us today and sharing your insights, your stories, and such practical strategies for supporting people through diabetes burnout and distress. And thank you to our listeners for listening to this episode of Diabetes Care Conversations and engaging with ADCES. You can find any resources related to this episode in the show notes. And remember, being an ADCES member gets you access to many resources, education, and networking opportunities. Learn about the many benefits of ADCES membership at adces.org slash join. All the information in this podcast is for informational purposes only and may not be appropriate or applicable to your individual circumstances.
This podcast does not provide medical or professional advice and is not a substitute for a consultation with a healthcare professional. Please consult with your healthcare professional for any medical questions.