The impacts of diabetes on mental health are often overlooked when set against the physical impacts. Yet, diabetes management places a heavy burden on patients, whose attention and mental and physical energy are constantly solicited.
Here’s an overview: people with type 1 diabetes (T1D) have to take medication, check their blood sugar, cook and eat healthy food, do enough physical activity, be alert to potential complications and, most importantly, balance everything while trying to live a “normal” life! Despite all this work, blood sugar levels may be out of range, which can make T1D patients feel powerless and frustrated. This is when diabetes-related distress can manifest.
Diabetes-related distress: a common phenomenon
Diabetes-related distress stems from the negative emotional impact of life with diabetes, its treatment and its impact on lifestyle. It goes beyond a lack of motivation or frustration, and extends to fearing health issues or complications, such as severe hypoglycemia, and feeling overwhelmed by diabetes management. In fact, people with T1D need to make roughly 180 decisions each day for their diabetes alone. Patients who experience diabetes-related distress might be so worried about their future that they might neglect their health or even go into seclusion. They might then feel isolated, lonely and anxious for long periods of time.
A low level of diabetes-related distress is likely to have little impact on patients, but a high level of distress can lead to:
- Decreased quality of life;
- Neglect of diabetes-related care;
- Poor blood sugar control;
- A higher risk of complications.
It is estimated that around 40% of people with T1D experience diabetes-related distress. If there is any doubt, levels of distress can be screened and assessed using specific assessment tools (in French only).
Diabetes-related distress is not exclusive to T1D; people with type 2 diabetes (T2D) can also experience it.
What’s the difference between T1D and T2D?
While T1D and T2D share a similar name, they are two very different conditions.
There is a wealth of information on their respective physiological mechanisms (T1D: autoimmune condition with loss of insulin secretion; T2D: insulin action resistance combined with a decline in insulin production) and treatments (T1D: insulin exclusively; T2D: lifestyle changes combined with oral medication or injectable medication, such as insulin), but there is little information on diabetes-related distress in both types.
Previous studies seem to have concluded that diabetes-related distress in people with T1D is mostly associated with emotions (e.g., feeling of powerlessness), fear of hypoglycemia and concerns about their future, while it is mostly associated with diabetes management in people with T2D.
Recently, researchers interviewed 19 people with T1D and 29 people with T2D, looking to better identify the differences and similarities between the respective experiences of these two groups in terms of diabetes-related distress. The interviews revealed the following three key elements:
- Lack of control
All participants said they felt like they lack control over their blood sugar levels, the misconceptions about diabetes among their friends and loved ones (e.g., types of forbidden foods) and the resulting stigmatization.
However, participants with T1D were alone in feeling like they have little control over their emotional reactions, especially when experiencing hypoglycemia or hyperglycemia.
- The constant burden associated with diabetes management
All participants mentioned how pervasive and inescapable diabetes management is (there is no such thing as a break from diabetes).
However, participants with T1D considered that diabetes management is vital—overlooking it could potentially be deadly—, while this wasn’t the case for participants with T2D.
- The importance of social support
All participants acknowledged that they need healthcare professionals and their friends and loved ones to support them with diabetes management and to acknowledge the struggles of living with diabetes. While many participants with T1D recognized that healthcare professionals and peers had acknowledged their burden, participants with T2D said that they need to feel better supported.
All participants said that other people don’t really understand what they are going through and called for a change. Indeed, diabetes-related distress is often caused by the stigma of diabetes, regardless of the type.
Fighting prejudice can be achieved through education and a better media representation of T1D and T2D (article in French only). It also seems crucial that healthcare professionals have access to more training on diabetes-related distress in order to better address it with their patients and better support them.
- Kiriella, Dona A et al. “Unraveling the concepts of distress, burnout, and depression in type 1 diabetes: A scoping review.” EClinicalMedicine vol. 40 101118. 28 Aug. 2021, doi:10.1016/j.eclinm.2021.101118
- Orben, Kimberlee et al. “Differences and similarities in the experience of living with diabetes distress: A qualitative study of adults with type 1 and type 2 diabetes.” Diabetic medicine: a journal of the British Diabetic Association, e14919. 17 Jul. 2022, doi:10.1111/dme.14919
Written by: Sarah Haag RN. BSc.
- Amélie Roy-Fleming Dt.P., EAD, M.Sc.
- Rémi Rabasa-Lhoret, MD, PhD
- Anne-Sophie Brazeau RD, PhD
- Sonia Fontaine, Jacques Pelletier, Marie-Christine Payette, Michel Dostie, Eve Poirier, Claude Laforest, patient-partners of the BETTER project
Linguistic revision by: Marie-Christine Payette