Q&A: Navigating emotional, mental health issues in people with diabetes
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Key takeaways:
- Care for emotional well-being and mental health are integral parts of diabetes care.
- The relationship between emotional well-being and diabetes management is bidirectional, which may affect glucose levels.
Susan Weiner, MS, RDN, CDN, CDCES, FADCES, talks with Persis Commissariat, PhD, CDCES, and Amit Shapira, PhD, about how to manage emotional and mental health issues in persons living with diabetes.
Weiner: Why is it important to address emotional and mental health in persons living with diabetes (PWD)?
Commissariat: Diabetes affects so many aspects of a person. It can have physical effects on the body, add mental burden around planning and troubleshooting management, impact emotional well-being when diabetes feels stressful or burdensome, change the way PWD experience and engage in social situations, affect daily routines and future plans, and more. Diabetes is so much more than just making behavior changes and managing glucose levels. When you think about diabetes in the context of a person’s life — a person with unique needs, resources, and responsibilities — then it becomes clearer why emotional and mental health are so important to address. Care for emotional well-being and mental health care are important, integral parts of diabetes care.
Weiner: The relationship between mental health and diabetes management is complex and complicated. Can you discuss how it is also bidirectional?
Shapira: The relationship between mental health and diabetes management is complex and intertwined, in part because the association between management and mental health is thought to be bidirectional. On the one hand, one’s emotional well-being can impact their ability to engage in diabetes management, which then affects glucose levels. On the other hand, the burdens of diabetes management can bring up negative emotions around diabetes such as distress or anxiety.
Weiner: What is diabetes distress and how should it be addressed?
Shapira: The term diabetes distress refers to a variety of common, negative emotional reactions (eg, sadness, worry, fear, anger, stress, etc) that people may experience in response to the experience of living with diabetes. It is not a psychiatric diagnosis, but rather a common emotional experience among PWD. Diabetes distress can come up at any point in one’s duration of diabetes. It is important that all health care professionals are aware of potential distress, and regularly assess and provide emotional support and validation for diabetes distress as part of the person’s overall diabetes care. Diabetes can be stressful, and we want to normalize treating that stress. It is also important to encourage further support with a referral to a mental health professional.
Weiner: PWD may experience fears related to hypoglycemia, hyperglycemia or diabetes-related complications. What suggestions do you have to address these fears?
Shapira: PWD may experience a number of diabetes-specific fears. There is no one way to treat such fears; we have to take into account the fear itself, its source and triggers, the PWD’s options and willingness to address it, etc.
For example, some PWD may experience fear of hypoglycemia, which is an intense worry of experiencing hypoglycemia symptoms and the consequences of low glucose levels. On the other end of the spectrum, PWD may experience fear of hyperglycemia, or a worry about experiencing high glucose levels and its associated consequences.
Some PWD also have significant fears around developing future diabetes complications, which may present in their emotions, behavior and outlook on life with diabetes. It is important to understand that each diabetes-related fear may lead to different compensatory strategies (eg, adjustment in insulin, food intake or activities) that can interfere with diabetes management and overall well-being.
Depending on the fear and associated compensatory strategies, a variety of cognitive-behavioral or educational approaches may be utilized. Education can help to address misunderstandings that drive a fear. A mental health professional can assist PWD in cognitive-behavioral strategies to adjust maladaptive thoughts and actions around a fear. Addressing these fears head on can provide solutions to real-world challenges that PWD face on a daily basis.
Weiner: Are there common mental health disorders in PWD? How are they best addressed?
Shapira: Depression, anxiety and eating disorders are all common mental health disorders seen in PWD. These psychiatric disorders are not diabetes-specific. Depression, anxiety and eating disorders all require frequent, evidence-based treatment delivered by a mental health professional. Health care professionals who are not mental health-specific may benefit from the use of validated screening tools to drive a discussion around the PWD’s difficulties before making a referral.
Weiner: Can you describe why it might be challenging for PWD to accept diabetes and its associated treatments as part of their daily lives and identities?
Commissariat: To answer this, it’s important to consider the impact that diabetes has on a person outside of their glucose levels. Diabetes is so much more than just managing glucose levels; it can affect a person’s day-to-day life, body, emotions and social networks. Management tasks often require people to adjust their daily routines or make lifestyle changes. They will have to now pay close attention to diabetes care and devote time and effort to these tasks. Some people will experience changes to how their body looks (eg, wearing devices or developing scarring from needles). They will have to learn how their body feels at different glucose levels, and then act on them. PWD may experience emotional challenges around diabetes, like worry about stigma, fear of complications or feeling burdened by diabetes care, to name a few. PWD may also have to manage impacts on their social lives. Some might struggle to manage diabetes in social settings, some may experience or fear stigma, others may develop conflicts within their current networks if they are not receiving the support they desire. In addition, PWD have to manage these burdens while balancing their other life responsibilities and goals.
This can make it really challenging to accept and integrate diabetes not just into daily life, but into one’s identity (or who they want/believe themselves to be, as a PWD). However, research has demonstrated that greater acceptance and a more positive identity as a PWD shows significantly better glycemic and psychosocial outcomes. That is why it is so important for all health care professionals to support PWD in finding ways to incorporate diabetes into their lives and identities.
Weiner: What are some of the signs someone may be struggling with the social-emotional burden of diabetes?
Commissariat: This is a great question, because people may not always recognize or be vocal about when they’re struggling emotionally with diabetes. In our recent paper published in 2024 in Cutting Edge Nutrition and Diabetes Care, we included a table of signs that people may be struggling with the burden of diabetes even when they do not state it outright. These are:
- acknowledgment of other higher priorities;
- admitting to stress around diabetes;
- frustration/anger/sadness around diabetes;
- noted barriers to accessing care or supplies;
- reduced engagement with diabetes care;
- reduced engagement with the diabetes care team;
- not being able to care for themselves in the way they want to;
- deteriorating glycemic control;
- noted limited support for diabetes;
- trouble adjusting to diagnosis; and
- trouble adjusting to new treatment regimens.
Weiner: Should mental health issues for a PWD be discussed by physicians and other professionals as part of routine visits? What guidance can you offer to health care professionals?
Commissariat: We know that mental health and diabetes management challenges are often intertwined, and that diabetes impacts so many aspects of a person’s life. In fact, the American Diabetes Association and Association of Diabetes Care & Education Specialists both emphasize the importance of recognizing and asking about mental health challenges in diabetes care. Asking about mental and emotional well-being as part of routine visits offers so many benefits. It normalizes the potential emotional challenges of diabetes and offers a safe space for further discussion for the patient. It also provides valuable information for health care professionals by adding context to the PWD’s behaviors or glucose levels.
It is also important to note that discussing mental and emotional well-being does not necessarily mean treating it. Respecting that treatment of mental and emotional challenges are not within the scope of all professionals, we emphasize that simply asking about such challenges offers a next step for professionals to better support their patients. For example, a PWD who endorses a resistance to taking insulin may require more education, while a PWD who endorses significant depression affecting their management behaviors will require a referral to a mental health professional. The ADA offers an excellent resource for health care professionals assessing mental and emotional well-being in diabetes care called the Diabetes and Emotional Health Workbook. The workbook presents the 7 A’s model, a step-by-step guide for health care professionals to discuss, assess and formulate next steps for a patient struggling with emotional and mental health challenges.
Weiner: What are some of the common barriers seen after referral to a mental health care professional?
Commissariat: Common barriers to mental health care can be both internal and external. Some PWDs may be hesitant to seek mental health care because of personal beliefs of what such a referral signifies: stigma, time, finances and more. Others may be open to a referral, but encounter barriers to accessing care (eg, finding a professional, insurance coverage, long wait times) or finding a professional who is the right fit for them.
To combat these barriers, it will be important for the referring health care professional to maintain continuity of care and support the PWD in overcoming their respective barriers to mental health care through education, extra support or instruction. We encourage emphasizing that mental health care is part of diabetes care. Diabetes affects so many parts of a person — why wouldn’t we treat all those parts too?
References:
- American Diabetes Association Diabetes and Emotional Health Workbook. https://professional.diabetes.org/professional-development/behavioral-mental-health/MentalHealthWorkbook. Published 2021. Accessed Oct. 8. 2024.
- Commissariat PV, et al. Cutting Edge Nutrition and Diabetes Care. 2024; 2(1):13-17.
- Gonzalvo JD, et al. ADCES in Practice. 2019;doi:10.1177/2325160319826929.
- Young-Hyman D, et al. Diabetes Care. 2016;doi:10.2337/dc16-2053.
For more information:
Persis Commissariat, PhD, CDCES, is a clinical psychologist and assistant investigator at Joslin Diabetes Center and an assistant professor of psychology at Harvard Medical School. She can be reached at persis.commissariat@joslin.harvard.edu.
Amit Shapira, PhD, is a clinical psychologist and research associate at Joslin Diabetes Center and an instructor of psychology at Harvard Medical School. She can be reached at amit.shapira@joslin.harvard.edu.
Susan Weiner, MS, RDN, CDN, CDCES, FADCES, is co-author of The Complete Diabetes Organizer and Diabetes: 365 Tips for Living Well. She is the owner of Susan Weiner Nutrition PLLC and is the Healio | Endocrine Today Diabetes in Real Life column editor. She can be reached at susan@susanweinernutrition.com; X (Twitter): @susangweiner; Instagram: @susanweinernutrition.
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