Diabetes is a long, incessant road for the patient, caregiver, and clinician. This is especially true in the case of patients struggling with diabetes burnout — a state of disillusionment and almost hopeless acceptance of their condition. It can be a considerable challenge to help people with diabetes burnout get back on track to effective self-management, so what can clinicians do to recognize and address the problem effectively?
Understanding diabetes burnout
It has been suggested that over a period of 18 months, between one-third and half of people with diabetes could experience diabetes burnout or “diabetes overwhelmus.”1 Senior Diabetes Dietitian Cam Johnson, defines this condition as “the physical and/or emotional exhaustion caused by the continuous distress of living with diabetes, the fear of complications, and the effort to self-manage the condition.” Ginger Vieira, author of Dealing with Diabetes Burnout, says, “It’s hard to give just one definition for ‘diabetes burnout’ because what that looks like in your life compared to mine or anyone else’s can be drastically different…there is no specific behavior, length of time, or intensity of burnout that qualifies it as a real burnout.”2
Understanding the patient psyche
The first step in the process of helping patients overcome diabetes burnout is understanding the patient psyche. What triggers burnout in the first place and what does a patient go through during this period? According to Johnson, considerable focus is often given to food and diet, which can be excessive and unnecessary. Extensive discussions on food choices, portions, and timings can adversely impact a patient’s state of mind and lead to frustration and negative pressure. “Some of these pressures are placed on the patient by themselves, but also by other individual’s comments and judgements, including that of health professionals,” says Johnson. Patients can, therefore, slip into a loop of frustration, self-criticism, and feelings of shame and guilt.
Diabetes requires a lot of individual effort and decision-making every day, according to Joan Williams Hoover, who pioneered the concept of diabetes burnout. This unending need is difficult enough in general, but even more so because of the unpredictability of the outcomes. Failure despite effort can trigger deep frustration, helplessness, exhaustion, and even depression.3
Since diabetes burnout overlaps or comes in the guise of other conditions such as anxiety, stress, and depression, it can be difficult to diagnose. However, there are specific tools and techniques to help clinicians and their patients identify and battle burnout. For example, the Diabetes Distress Scale is a survey that can be used to record regimen distress, emotional concerns, and personal and physician-related distress in patients with both Type 1 and Type 2 diabetes.4
Be it financial concerns, lack of family and social support, or mental fatigue from long-term self-care, patients can burn out at any time and for any reason. With this understanding, clinicians must set their foundations of treatment on the premise that diabetes burnout is natural, normal, real, and unique for each individual.
Some of the steps you can take are as follows5:
➢ Challenge the “all-or-nothing” mentality of patients; reinforce the importance of effort rather than outcome to keep them motivated.
➢ Encourage patients when they improve at even the smaller tasks of self-management; praise every effort as well as achievement.
➢ Don’t judge patients on their blood glucose results. Assess them on their effort.
➢ Provide different and practical ideas on self-care so that patients have a varied toolbox.
➢ Make advice sessions more interactive than didactic to share knowledge while also gauging patient understanding.
➢ Listen. This is a key element in understanding patient pain points and then working towards a solution that is suited to them.
➢ Validate patient concerns and sentiments. For example, let them know that their feelings of frustration are completely understandable.
➢ Keep reminding patients of their successes and milestones.
➢ Break down targets into smaller and more achievable goals.
Aim for prevention
Speaking from his own professional experiences, Johnson explains, “One issue many clients present with is the perception that they need to eat a perfect diet all the time. This may lead to feelings of frustration, hunger, breaking their plan, and feeling guilty, only to try even harder to be strict with their perfect diet. This leads to an unhealthy and unsustainable cycle.” In other words, let’s not add to the pressure that people with diabetes already face.
Johnson advises clinicians take the following steps towards preventing diabetes burnout:
➢ Use the right language with patients. For example, rather than saying, “You are not following your regimen properly,” you could say “Your burnout is completely understandable, but let’s work out how we can ensure you stick to your regimen.”
➢ Be patient-focused as opposed to condition-focused. Understand their life conditions.
➢ Empathize with patients’ problems.
➢ Be attentive to patients’ goals, successes, and fallouts without being judgmental.
➢ Refer patients to psychological support if they appear to be at risk of burnout.
Diabetes by its very nature is isolating, and when people with the condition struggle with burnout, the isolation is both a cause and a compounder of the problem. However, with advances in technology, as well as a strong social media group culture, there are many innovative ways to ensure people with diabetes don’t feel alone — which, in turn, can prevent burnout. For example, there are diabetes camps for kids with Type 1 diabetes,6 where children can share their feelings and find ways to cope. Additionally, initiatives such as Connected in Motion7 offer people a platform to connect with each other while engaging in adventurous outdoor activities. Facebook support groups are also effective for people to vent their frustrations and learn tips on how to manage their condition. Tools such as these can prevent burnout by helping patients organize their self-management regimen while staying connected to others.
With holistic clinical support — medical treatment as well as motivational guidance and knowledge sharing — patients can be motivated to overcome their feelings of hopelessness and stay off the diabetes burnout track.
Access additional resources and practical information to enhance the care and treatment of your diabetes patients.
About our expert
Nicola Davies, PhD, health psychologist and author of I Can Beat Obesity! Finding the Motivation, Confidence and Skills to Lose Weight and Avoid Relapse