diabetes burnout: why managing 'one of the most intrusive diseases' is so challenging
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diabetes management burnout can lead to people throwing in the towel on their disease, which can lead to poor short- and long-term health outcomes.
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we all have the same 24 hours in a day, but people with diabetes have to use between two and three hours per day just to dedicate to managing their disease. that’s on top of their everyday responsibilities, such as work, home life, social obligations and family.
because the disease takes up so much time, many people living with it experience what is known as diabetes management burnout—a term coined to describe the exhaustion that eventually happens when managing a chronic disease that’s so demanding becomes distressing in and of itself.
“it’s probably one of the most intrusive diseases,” said dr. michael vallis, a health psychologist specializing in chronic disease, specifically diabetes, obesity, cardiovascular risk and gastroenterology. “diabetes shows up like every 10 minutes, every 20 minutes. it’s an in-your-face disease really like no other disease.”
people living with diabetes have to continuously consider their blood sugar levels and their lifestyle choices, along with when they should be taking their medication, regardless of whether they’ve eaten, whether they haven’t eaten, if they’re under some stress, if they exercise or if they want to take some time to just sit down and relax. the management is never-ending.
it’s not like other diseases in the sense that some may go into remission, giving someone a break from having to really think about it all the time. some could be adequately managed through surgery. but not diabetes.
“the burden of this disease is really, really high, and i sometimes think of it in the following way: i don’t care how strong you are; i could give you a weight that would crush you,” said dr. vallis. “diabetes is like that.”
burnout starts small and builds
people with diabetes don’t start out exhausted from all the things they have to do to care for themselves. they have the best intentions of keeping their blood sugar levels in check, eating foods and exercising in a way that will help, and staying on top of their medications all at the same time.
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some people may start to think that they just don’t want to deal with it anymore. they wish they could take a vacation from it all, just like you would if you were having an ultra-stressful time at work, to recharge. the issue is that when these feelings arise, it’s only the beginning, and eventually, all the right things they’ve been doing become too much to handle for one person.
dr. tiffany shepherd, a clinical health psychologist who supports chronic disease-based programs in diabetes, obesity and inflammatory bowel disease (ibd), notes that there are certain behaviours to watch out for in the early stages of burnout, “like every once in a while, not taking medications as much or maybe delaying putting your blood glucose monitor back on, like maybe you were done with it and you needed to put a new one on, but you took a couple of extra days.”
when the mind begins to give a person a hard time about their success in managing diabetes and the frustration sets in, it’s a challenge to keep things from escalating. this is especially true because people with diabetes can do all the right things and still, when things aren’t perfect, end up seeing their doctors and feeling as though they’re kids “being called into the principal’s office,” said dr. vallis.
“it’s so common for people to walk into the office and the very first thing to say is, ‘you’re not going to be happy with me,’ which is such an interesting and not helpful dynamic,” said dr. vallis.
they continuously blame themselves for not being perfect, and since the medical providers typically send them off on their own with a list of solutions while ignoring “the challenges around what it’s like to live with these conditions,” it’s hard not to go down a spiral of fatigue, shame, guilt and distress.
depression vs. distress vs. burnout
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people living with diabetes are at an increased risk of developing depression, but distress and burnout, while sometimes overlapping, are not one and the same. depression is something that would be there regardless of their disease, whereas distress and burnout are in direct relation to the day-in, day-out ordeal of managing it.
“everything you’re doing is steeped in diabetes … throughout the day,” said dr. shepherd. “it’s sort of like double duty in a lot of ways, so much of what a person does, they’re doing it, but they’re also keeping diabetes in the background as well.”
diabetes isn’t necessarily causing depression, while all three can coexist, but because they have this significant burden on top of everything else in life that can contribute to poor mental health—relationship issues, loss and grief, financial hardships, the works—people with the condition can live with high rates of all three. dr. shepherd notes that diabetes distress and burnout occur in as many as 40 per cent and up to 25 per cent of individuals with diabetes, respectively.
for depression, as many as 30 per cent of canadians living with diabetes develop that, too.
but “it’s not just about depression,” notes dr. vallis.
“if you ask people who have depression, that 12 per cent [of people with diabetes] who have depression, you ask them, ‘what’s so depressing about your life? diabetes is going to be high on their list.”
he continued, “when we encounter those people, the appropriate thing to do is refer them to mental health because they are the experts, so what we have isn’t an abnormal person in a normal world, but a normal person in an abnormal world. your body’s not supposed to fail you. most of us just go through life [and rely on the fact that] our body is there and we tell it what to do, and it does it, and it’s happy to do it, and we get tired, and we get to sleep and we’re fine.”
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in diabetes, though, people are not only continuously fighting against the stressors of their own worlds. their bodies have turned on them, leaving them with an extra burden that they’re supposed to just be able to cope with perfectly.
“it’s important that we normalize that,” said dr. vallis, referring to the fact that it’s not a fault in the person with diabetes feeling extremely burnt out over management. it’s “super common” and can eventually reach the extreme point of wanting to give up.
in some cases, people may cycle between being incredibly rigid in their routine and doing the exact opposite, notes dr. shepherd.
when overwhelming burnout becomes too much
when diabetes burnout gets too much, many people will want to throw in the towel. however, because there are many short- and long-term consequences, doing so will only put their health at risk. it’s also harder to pull people back into care once it reaches a certain point, making things that much worse.
“that’s a really big concern,” said dr. shepherd. “if burnout has led to not going to appointments anymore and there isn’t an opportunity to discuss.”
dr. vallis notes that when he speaks with patients who are at the end of their rope with diabetes care, he considers what they can do to give them a much-needed break and what that would entail, so they can both be careful with their health while getting a chance to breathe.
“we don’t want a person feeling like, ‘i’m weak. i should be able to do this on my own. i’m going to white-knuckle it until i collapse in a heap,’” he said. “we want people to sort of reach out and say, ‘you know what, this is getting tough.’”
in that instance, he suggests planning a vacation from diabetes, just like you would any other vacation, with the supervision of your health-care provider of course.
“if you were going to greece, you wouldn’t just get on a plane and go to greece. it would probably be a number of weeks that you would plan it. why not the same thing?” he said. “why not say, ‘look, you know what? i’m going to make sure i’m doing really well; i’m going to get my blood glucose levels in a good range … and then i’m going to take a long weekend. i’m just going to do minimal [management], and that’s it.'”
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dr. vallis notes that if patients do that correctly, they can come back rejuvenated, just as they would if they were escaping another stress in their lives. the best way to ensure that people can reach a point where they can take a break and avoid extreme burnout is through earlier detection and reframing what it means to take a real break from diabetes.
he likens it to studying, noting that you wouldn’t tell students to study 10 hours a day. you’d tell them to study for two hours, take breaks to recharge and, in the end, it’ll be a much better outcome.
“what i’d like to promote is that diabetes is distressing, and we need to incorporate into diabetes management much more of a perspective rather than the schoolmarm, you know, you’ve been a bad student, you need to stay after school and write on the board ‘i will study for two hours a day.’”
reframing motivation
when the diabetes burnout is too strong and people feel like giving up, it’s much easier to push management behaviours to the side than to keep up with them. that’s why burnout can be so detrimental. but waiting for motivation to hit isn’t going to work either, because the feeling of doing well comes after the activity is already done.
for example, a person may not want to get up to check their blood glucose levels in the morning. they’re exhausted. they want to stay in bed, but they know they need to get up at the same time every day because it helps their glucose levels. it’s when people start to rationalize not getting up that motivation is lost.
“that would be, i think, the beginning of the burden, because i think that’s the kind of state that we need to appreciate because, it’s true, diabetes is too demanding,” said dr. vallis. “it’s unforgiving.”
but the fix isn’t to wait for it to return. it’s to follow through with the behaviour anyway, acknowledging that it’s hard, it’s frustrating, but after it’s taken care of, you’ll feel better.
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“many people think motivation precedes behaviour. it’s actually more likely the other way around. motivation follows behaviour,” said dr. vallis.
how do people find that motivation? find their why.
“the quality of life outcomes in diabetes are less associated with how much work you do than with why you’re doing it,” said dr. vallis. “i’m doing it because my doctor insists i do it goes into a negative category. if i’m doing it because i want to bounce my great grandkids on my knees in 50 years, then it’s going to enhance my quality of life.”
he continued, “what we can say then quite clearly is that managing that psychological signal, managing that burnout, what we’re really talking about is disease acceptance, improving acceptance of the disease and treatment acceptance of the therapies and self-management motivation … [you] surrender to win.”
to accomplish this, it’s vital that people living with diabetes have a strong support system from their clinicians and that their medical team understands the severe and detrimental impact of the emotional burden of the disease. they must talk about burnout with the patient if they’re going to help, notes dr. vallis, because those “normal emotions” deserve a voice.
finding coping strategies to deal with stress can also help, as long as it is something enjoyable that they actually want to be doing. for example, many people say yoga can help you de-stress, but if you hate yoga, finding something else is far better than trying to force it. it’s about empowering people to find what works for them by asking them to figure out what they want to do rather than telling them what to do.
there is one other very important aspect of managing diabetes burnout that people living with diabetes need to remember: it’s not their fault they can’t always carry the weight.
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“have some self-compassion,” said dr. vallis. “we want people who are struggling to say, ‘i’m not weak.’ because that’s exactly what people say, ‘i’m sorry. i know i should be able to do better. i’m sorry.’ why are we apologizing for something that would be part of the disease? … we don’t have any control over it, and even though we can control our behaviour, the demand of diabetes is [immense].”
dr. shepherd echoes that sentiment.
“this [diabetes burnout] is not uncommon. diabetes is really challenging. there’s a lot of moving parts. you’ve already got a lot on your plate as a human being; you also have this that you’re dealing with as well,” she said, continuing that people should be “making sure that you have the opportunity to take a look at the things that went well and give that extra weighting in your mind.”
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