What Is Diabetes Burnout and What Can You Do About It?

What Is Diabetes Distress—and How Does It Lead to Burnout?

Interviewer: If you have diabetes, managing it can be exhausting. Diabetes burnout is the emotional and mental exhaustion that comes from the day-to-day demands of managing your diabetes, and there is help if you're struggling with this.

Michelle Litchman is the Medical Director of the Intensive Diabetes Education and Support Program at University of Utah Health. And is this something you see regularly, this idea of diabetes burnout?

Dr. Litchman: Absolutely. We see diabetes distress, diabetes burnout, absolutely both of them.

Signs You May Be Experiencing Diabetes Burnout

Interviewer: Wow. So that's kind of the mental component of a physical disease that people have to deal with as well. Tell me a little bit more about diabetes burnout. Like, what is it?

Dr. Litchman: Well, so before burnout comes diabetes distress. So diabetes distress is like the overwhelm, the emotional weight, and there are actually three components to it.

1. So there's the overwhelm of all of this stuff that you have to do to interact with your clinician or the clinic, getting prescriptions, all of that.
2. And then there are the day-to-day tasks, and that's checking your glucose, thinking about what you're eating, doing the exercise, all of that.
3. And then the third part is the interpersonal interactions that you're having with family, friends, and in the workplace.

And so all of those three things combined can create this emotional weight. And when it becomes really, really overwhelming, then you get to burnout, which is like this state of detachment. You just feel done. I don't have the mental energy to manage diabetes because I don't have the available resources anymore. And so this can lead to withdrawal of different self-management behaviors.

Why Diabetes Burnout Often Goes Unrecognized

Interviewer: That sounds terrible. Most of us take our health for granted, but it sounds like if you have diabetes, that's kind of done. And there's a lot of stuff coming at you from a mental health standpoint. Is this something that some people have that they don't even know is a thing that they're struggling with it?

Dr. Litchman: Absolutely. Some people just feel like, "Why can't I just get it together to do the diabetes stuff?" But there's so much to do with diabetes. And over time, it can just really, really become a struggle. And when you think about parents and their children, it can be not just a struggle for the children with diabetes, but also the parents get overwhelmed as well. And so definitely we're seeing this kind of burnout existing with people with diabetes and also the caregivers who love and support them.

Diabetes Burnout vs. Depression and Anxiety

One thing to know is that diabetes distress and diabetes burnout can coexist with depression and anxiety. And so it's really important to understand what's actually happening. Is it distress? Is it depression? And the good news is that there are different screening tools that you can work with your clinician on so that you can actually pinpoint what's happening, because we do sometimes see them together, but you can also have just one on its own. So those screeners can come in handy.

Managing Expectations and Reducing Self-Blame

Interviewer: All right. I want to talk about the screeners, but I want to kind of go back to a thought that you had that really hit. And I think it's important to mention this idea of somebody kind of not having grace and kindness to themselves and saying, "How come I can't get it together when it comes to dealing with my diabetes?" And a lot of that is just because there are a lot of components that you just identified that somebody might not realize that there's a lot that goes into managing your diabetes. Do you find that to be a common feeling that people have?

Dr. Litchman: Absolutely. People can feel this overwhelm because not only are there the day-to-day tasks, the actual physically doing something, but there are all the thought processes that go into it. So there's so much thinking about diabetes before even doing the task. And then there are these intermittent things that happen, not all the time, but some of the time. So like picking up a prescription at the pharmacy, maybe calling your insurance because something . . . there's a challenge there, or making your appointments. And so there are so many extra things beyond just the day-to-day tasks.

Interviewer: And I feel like maybe a piece of advice that you'd give somebody is just to accept the fact that this is a difficult disease that has a lot of components and can cause a lot of stress, and not to be too hard on yourself about it.

Dr. Litchman: Absolutely. Giving yourself grace is really, really important. And then also finding the support system that you need when you're having these times of struggle is really key as well.

Screening for Diabetes Burnout and Distress

Interviewer: Tell me a little bit about the screening process then. Is this to find out the extent of the burnout or . . . What comes before burnout, did you say?

Dr. Litchman: Diabetes distress. So there's a diabetes distress screener, which can actually determine whether or not you should take the longer screener. So these shorter screeners are like just a few questions. Where the bigger assessment tool is, depending on which one you use, but it's either like 17 or 20 questions. And so you can screen first, just because we don't want to burden people with too many questions. But if you're feeling like you're just having this overwhelm, talking to your clinician about, "Hey, can I be screened for diabetes distress," that would be a really, really good thing to do so that you can understand if this is true for you or not.

What Happens When Diabetes Burnout Goes Untreated?

Interviewer: So ironically, somebody might be listening, going, "You just got done telling me how difficult it is to manage this disease on so many fronts. Now you're asking me to go to the doctor and take a screener." So my question actually is, how does this impact people? Like, I think putting it in the context of if you don't take the screener, if you don't fully understand where you're at to be able to manage things, like what does diabetes burnout look like if it's not properly managed?

Dr. Litchman: Yeah. So people can just disengage with care. And so that might look like a couple of things. One is maybe someone stops checking their blood sugars. Or they were following a specific healthy meal plan, and then they decided not to do that anymore. Or maybe they were exercising or being physically active in some way, and then they just disengaged from that. And so, really, just feeling like, oh, I'm just done with diabetes. I don't want to deal with it anymore. And so that is what we see as disengaging in these different activities.

How Burnout Can Affect Long-Term Health

Interviewer: Right. And it sounds like it could be a downward spiral after that. Then your health is going to start to get worse, and then your mental health is going to start getting worse as your physical health starts going downhill. Is that a common path that, if it's not taken care of, that you see?

Dr. Litchman: Absolutely. So one thing that's really important is just trying to recognize it early and having the people around you try to help you recognize it early as well.

Recognizing Burnout Early

Interviewer: And when people come into your clinic, do some people not even realize this is a thing? Like, you get done with this conversation, and they're like, "Wow, I didn't realize that this was something I was dealing with." And is there a certain bit of hope that they have?

Dr. Litchman: Yeah. So one of the things, when you point out to somebody all of the different little things that they're doing and how they add up, people just appreciate being recognized for all the hard work that they're doing. And even if something goes awry, I mean, that's how life is, right? Sometimes things go awry because different things happen. But trying to figure out how to get people back re-engaged is really, really important.

Four Ways to Manage Diabetes Burnout

Interviewer: How do you do that once you start to recognize if somebody is suffering from diabetes burnout?

Dr. Litchman: So I think that there are four different things.

The Role of Diabetes Education

So first, diabetes education is the gold standard. We don't have enough people going to get diabetes education. The reason why diabetes education is the gold standard is because there are a lot of great data that shows that diabetes distress levels improve when somebody's engaged with a diabetes care and education specialist.

And the reason for that is you can explain maybe some of the pain points that you might be going through. So one might be cost, or one might be you don't love checking your blood sugars. And so a skilled diabetes care and education specialist can see, okay, this is the pain point, and these are the tools or the resources that I have to support that person, which can maybe help that pain point be a little bit less. And so, really trying to figure out where the pain points are and how to support that.

How Counseling and Therapy Can Help

The second thing is some people really benefit from having some sort of therapy. And so, having a counselor or a therapist who really understands chronic disease management and all of the mental load that goes with that, that can be really, really useful.

Building a Strong Support System

And then the third, I think having conversations with your support circle. So this might be a parent, a sibling, a spouse, or even if you're an older person, like an adult child, having conversations with your support circle about how they could help offload some of the responsibilities that you have, because you don't have to do everything. So, for example, someone could help pick up your prescriptions. Someone could help you carb-count the meals. If you're using diabetes technology, they might be able to help change your pump site or your continuous glucose monitoring site.

And really also important is really having these conversations about what is useful encouragement versus what sounds like nagging. And so I think if you can talk to your support circle in offloading responsibilities and then being encouraging, that's also very, very useful.

The Power of Peer Support

And then the fourth thing I would like to say is how critical peer support is. Peer support can provide people with a sense of I'm not alone dealing with this, and there are other people who understand exactly what I'm going through. But peer support can also provide tips and tricks that maybe your clinician might not know about that can help you get through a difficult time. And so peer support, I really feel, is important as well.

Interviewer: That comes from somebody else's actual lived experience with the disease.

Dr. Litchman: Absolutely. And so who would know better than someone who's actually going through it?

Finding the Source of Your Burnout

Interviewer: That whole section there, I think, to me, the thing that really stood out as maybe the important step, and I never even thought of this until you mentioned it, is just identifying what it is about the condition that is burning you out, because that's going to vary from person to person. And I think it could be easy just to go, in general, I'm burned out, as opposed to you really nailing down, well, I don't really like to drive, so getting my prescriptions really stresses me out. If that were unloaded, that would help a lot.

Dr. Litchman: Absolutely. And I will say one of the bigger pain points is even dealing with insurance companies. And so that's the tricky one because sometimes insurance companies want to talk to you specifically. But if you got on the phone with them and then said, "Hey, I give permission for you to talk to so-and-so," and then handed the phone off, that could also be a useful trick.

Resources Available and Next Steps for Diabetes Support

Interviewer: Right. So it really comes down to the person understanding what it is they need help with, and then being able to ask whoever it is in their life, whether it's their physician, their friends, their support group, whatever, for that kind of help.

And I know at University of Utah Health that there are some additional programs that can help people as they try to offload some of this stuff that causes the stress and can lead to diabetes burnout, like access to specialty clinics, diabetes educators, nutritionists, and behavioral health. Talk about some of those programs that can lessen the load for somebody with diabetes.

Diabetes Education, Nutrition, and Behavioral Health Services

Dr. Litchman: Absolutely. So diabetes education, as I mentioned earlier, is the gold standard. So many of our clinics across the Wasatch Front have a diabetes care and education specialist that you can meet with. Typically, this is a dietitian or a registered nurse who has specialty skills in diabetes. And insurance is wonderful in that it covers, when you have a brand-new diagnosis, about 10 hours the first year, but also ongoing. So every year that you have diabetes, the insurance covers two hours every single year. And so, really taking advantage of that, it is covered by insurance.

The second thing I would say is that many of our clinics across the Wasatch Front with the University of Utah Health have these wonderfully trained clinical pharmacists. And the pharmacists are great in that they can help you understand your medications, the timing of the dosing, and if the dosing is adequate for what your needs are. And so these pharmacists are also wonderful individuals as well.

And then there are different behavioralists across the system, and sometimes they're embedded within the clinic. And also, we have some wonderful behavioral health specialists at Huntsman Mental Health who manage chronic disease as well. Whether it's within your local clinic or at Huntsman Mental Health, there's definitely someone who can provide those behavioral health or mental health services that you might need.

Finding the Right Diabetes Care Team

Interviewer: Is there a centralized location where people can see all of these different services that are offered?

Dr. Litchman: So I would start with the Utah Diabetes and Endocrinology Center first and look at their website, and then, also, that's where you can see all the diabetes educators as well. And then, if you just happen to live further from the University of Utah, you can also go to the American Diabetes Association or the Association of Diabetes Care and Education Specialists to find a diabetes educator nearest you in your ZIP Code.

Interviewer: And if you go to that website, you could actually then schedule an appointment with one of the educators. You don't have to do that through your primary care physician.

Dr. Litchman: To meet with a diabetes care and education specialist, you do need a referral. So that referral can come from your primary care provider or, if you are seeing an endocrinologist, your endocrinologist.

Interviewer: Okay. And same for the behavioralists and the nutritionists and all that other support?

Talking to Your Care Team About Burnout

Dr. Litchman: Absolutely. So the first step would actually be talking to whoever is managing your diabetes right now, whoever that clinician is, and reaching out to them and saying, "I feel like I'd really benefit from a referral to the diabetes education specialist or the clinical pharmacist or the behavioral specialist." And that would be a great start.

Interviewer: Yeah, be proactive about it. Tell your clinician what you need, right? You can do that. That's okay. That's okay, right?

Dr. Litchman: Absolutely. And you can tell them in a face-to-face visit, or use MyChart or the electronic communication system that you have with them, so that you can communicate what your needs are. And hopefully that referral can then just get ordered for you.

Interviewer: Wow. I think that this conversation is really going to help somebody who might be feeling the stress of managing their diabetes. And if you manage your diabetes, then your health is going to be better as well. Do you have any last kind of thoughts that you would like to leave listeners with before we sign off?

Dr. Litchman: Well, I'll just say that diabetes distress happens to a lot of people if you have diabetes long enough. And so, really finding the support that you need, so that can come from clinicians, can come from the ancillary staff that we have embedded within the University of Utah Health, but also can come from your family and friends. So just making sure that you're reaching out to your support network is going to be key.