What is Diabetes Distress?

Liz Beverly, PhD; Assistant Professor of Family Medicine, Ohio University

Allyson Hughes, PhD; Research Scientist, T1D Exchange

Lyndsay A. Nelson, PhD; Research Assistant Professor of Medicine, Vanderbilt University Medical Center

Maria D. Ramirez Loyola, MA; Graduate Student, University of California, Merced Health Sciences Research Institute

Alyssa Vela, PhD; Health Psychology Fellow, McLaren Flint

Diabetes distress is an emotional response to the burdens of living with diabetes and the self-care necessary to manage diabetes.

Most of us know someone who has diabetes. Worldwide, approximately 425 million people, or 1 in 11 adults, have diabetes. Diabetes is a complex condition that requires people to follow specific self-care activities, including regular exercise, eating healthy meals, frequent blood glucose level monitoring, taking diabetes medication, and attending medical appointments. It is understandable that people with diabetes may feel overwhelmed with following these self-care behaviors. It is important for family, friends, providers, and educators to understand diabetes distress and the impact it has on diabetes management.

Diabetes distress is different from depression and anxiety, and it is not a psychological disorder. High levels of diabetes distress are common, affecting nearly half (about 45%) of people with diabetes. Although some new research suggests that sources of diabetes distress may vary depending on the type of diabetes and the recommended medical treatment (e.g., insulin for Type 1 and Type 2 with or without insulin).  Overall, diabetes distress appears to lead to worse diabetes self-care and glycemic management, and is associated with increased morbidity.

What Does Diabetes Distress Look Like?

For family members and friends, signs of diabetes distress may look like burnout. People with diabetes distress may say things like, “No matter what I do, my hemoglobin A1C gets worse” or “I feel like I am always going backwards.”

Diabetes distress reflects several aspects of living with diabetes including:

1. Frustration with self-care (e.g., diet, exercise, medications, blood glucose monitoring)
2. Fears about the future and the possibility of developing diabetes complications
3. Concerns about the quality and cost of medical care
4. Feeling a lack of support from family members and/or friends.

How to help someone with Diabetes Distress?

Family members and friends can help people with diabetes by encouraging them to talk about their diabetes and stress, worries, and concerns with the disease (see the Centers for Disease Control and Prevention website for Coping with Diabetes Distress). Also, family members and friends can support people with diabetes by joining them in self-care activities and making healthy habits a team effort.

Another successful strategy is to help people with diabetes focus on small, realistic goals. For example, encourage them to set goals for eating and exercise one week at a time (“Pack lunch from home 3 days this week rather than eat out.”).

For providers and educators, diabetes distress can be assessed using different patient-reported outcome measures, such as the Problem Areas in Diabetes (PAID, Diabetes Distress Scale (DDS), and the Type 1 Diabetes Distress Scale (T1-DDS; check out the DDS and T1-DDS surveys at this link). These measures can help providers and educators focus the discussion on an individual’s major concerns and develop a tailored plan to address their specific needs.

Providers and educators can incorporate cognitive behavioral and problem-solving techniques into discussions with people with diabetes as well as refer them to a therapist trained in cognitive behavioral therapy. People with diabetes will experience some degree of diabetes distress at some point in their management. However, experiencing moderate to high levels of diabetes distress is not a normal part of managing the condition, and people with diabetes need support from us – family, friends, providers, and educators to reduce their distress.

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