The Emotional Side of Diabetes

This post was coauthored by Rossella Messina, a clinical psychologist and researcher based at the Università di Bologna in Italy. I credit Dr. Larry Fisher for the title of this post.

Imagine living with a condition that demands your attention every single day, affecting nearly every choice you make—what you eat, how you exercise, and even how you manage stress. This is the reality for millions of people who live with diabetes. But beyond the daily management of blood sugar levels, medications, and dietary restrictions, there lies a deeper, often overlooked aspect of diabetes care: the emotional side.

Navigating the emotional landscape of diabetes is as crucial as managing the condition's physical and medical side. The mental toll of constant vigilance, frustration due to behavioral limitations, and the anxiety of acute or potential long-term complications can be overwhelming. Yet, amidst these challenges, there is a story of resilience, empowerment, and hope. Understanding the psychology of diabetes care opens up a world where mental strength and emotional well-being are recognized as pivotal elements of overall health.

Quantifying the Emotional Side of Diabetes

It is a truism in clinical care, research programs, and policymaking: If it isn’t “counted,” it doesn’t “count.” When it comes to diabetes, this has a double meaning: People with diabetes typically engage in intensive self-management, including monitoring numerous quantities about their disease (weight, blood glucose, hemoglobin A1c, insulin dosage, caloric intake, and so on). These quantities then serve as the signposts for their health care providers to recommend changes to care regimens. If these numbers are “in range,” then no changes are warranted; if they are outside of range, then care may need to intensify. However, these numbers also create a false sense that these quantities fully encapsulate the experience of living with diabetes. Indeed, it is the aspects of having this disease that are not easily quantified—the emotional and psychosocial aspects of care, such as mental health conditions (e.g., depression, anxiety), diabetes-related distress, family and social relationships, technology- and regimen-related burnout, health-related stigma, and financial strain—that are often the primary determinants of quality of life for people with diabetes.

Two landmark efforts laid the groundwork for our current understanding of the emotional care needs of people with diabetes. The International Prevalence and Treatment of Diabetes and Depression (INTERPRET-DD) Study, which enrolled approximately 3,000 people, sought to understand the predictors of a range of mental health conditions among adults with Type 2 diabetes in 14 countries (not including the U.S.). Overall, this study found that roughly 11 percent of adults with Type 2 diabetes had current depression (about twice the prevalence of depression in the general population), yet less than 30 percent of these cases had been identified, much less treated, by a clinician.

The Diabetes Attitudes, Wishes and Needs (DAWN) Project involved two large inernational studies—DAWN-1 enrolled about 5,000 and DAWN-2 enrolled roughly 9,000 people from 13 countries, including the U.S.—of both people with Type 1 and Type 2 diabetes, as well as a sample of about 4,000 diabetes care providers. The DAWN Projects confirmed the elevated prevalence of depression among this population and found that about 40 percent of people with diabetes had poor quality of life or significant diabetes-related distress, yet less than 25 percent said they had been asked by their health care team how diabetes impacted their lives. Collectively, INTERPRET-DD and DAWN demonstrated that the emotional side of diabetes is a major factor determining quality of life for people with diabetes, both in the U.S. and globally, and that there are substantial gaps in meeting emotional support and care needs.

Addressing the Emotional Side of Diabetes Outside Health Care Settings

Living with diabetes can be tough, and as the studies reviewed above demonstrate, most health care settings are poor at detecting and effectively supporting the emotional aspects of this condition. However, this care gap is being addressed by international programs and initiatives, many of them led by people who have diabetes. Programs like Peers for Progress connect you with peer supporters for guidance and encouragement. Peers for Progress engages in various advocacy activities to promote the integration of peer support into health care systems. They work to influence policy by demonstrating the effectiveness of peer support through research and evidence-based practices. They also build partnerships with health organizations to expand peer support programs and raise awareness about the benefits of peer support for managing chronic conditions. Additionally, Peers for Progress provides resources and training to empower communities to implement peer support, enhancing health outcomes and overall well-being.

Peers assist in various ways, including providing emotional support, sharing practical advice for daily disease management, and encouraging adherence to treatment plans. They help individuals navigate health care systems, offer motivational support, and connect them to community resources. Moreover, being a peer supporter is beneficial not just to the person receiving help but also to the supporter, because engaging in peer support fosters a sense of purpose, enhances personal health knowledge, and builds social connections. These interactions can improve the supporter's own well-being, creating a mutually beneficial relationship that helps both parties manage their health more effectively.

Research and clinical conferences also offer significant support. The Psychosocial Aspects of Diabetes (PSAD) Group invites people with diabetes to their conferences, ensuring their voices are heard in scientific discussions. Organizations like Diabetes UK, the American Diabetes Association (ADA), and Successful Diabetes offer valuable resources, from dietary guidelines and exercise tips to the latest research on diabetes management. Practical guides like Kaiser Permanente's "Living With Diabetes Step by Step" provide straightforward advice on meal planning and blood sugar monitoring.

Tips for Talking to Your Doctor About the Emotional Side of Diabetes

Being diagnosed with diabetes involves multiple psychological processes, including accepting the diagnosis and making (and managing) several, sometimes complex, behavior changes. When talking to your health care provider about diabetes management, be proactive and specific about your needs. Address emotional and mental health concerns with your health care provider, even if they haven’t been asked about during the visit or aren’t the main reason you are seeing your provider that day. Be direct if you are interested in being referred to a psychologist for professional support, but also know that such a referral may take several weeks to materialize given the shortage of mental health specialists. Ask about educational materials and programs your hospital offers, and express interest in conferences or workshops. Inquire about local initiatives or online platforms that connect health care professionals and individuals with diabetes for mutual support. Connect with local diabetes charities, and ask if they offer a peer support program—or consider volunteering to start one using the resources provided above!

Depression Essential Reads

When the Brain Has Difficulty Listening to the Heart

When It Feels Impossible to Get Out of Bed

What scientists know from studies like INTERPRET-DD and DAWN is that feeling distressed, anxious, lonely, misunderstood, burned out, or depressed about your diabetes is extremely common—so common, in fact, that these feelings should be considered core symptoms of diabetes, just like blood sugar, fatigue, and so on are considered core symptoms of this condition. Indeed, even though the emotional aspect of diabetes is not as easy to “count” as your blood sugar or carbohydrate intake, it is as much a part of this condition as those quantities are!