Living with type 1 diabetes is a daily struggle that can prove stressful and exhausting. In addition, it can turn into a vicious circle that leads to a lack of motivation, poorer glycemic control, a greater risk of diabetes-related complications and a decreased quality of life.
“Diabetes is unique as a disease because the self-management requires constant activity, mental energy and physical energy,” explained Felicia Hill-Briggs, immediate past president for health care and education for the ADA (American Diabetes Association).
“You have to take medication, check your blood sugar, cook healthy, eat healthy, make sure you’re getting enough physical activity, and be sure to balance all those things,” she added.
She likened living with type 1 diabetes to running in a marathon: even the best-trained athletes sometimes collapse at the end of a long race.
Even though diabetes burnout is a known condition, there are no tools to manage it or prevent it from happening.
In a recent study, the University of Tennessee in Knoxville sought to observe and analyze past or present diabetes-related burnout cases experienced by 18 adults with type 1 diabetes. The goal was to better understand these experiences as well as the risk factors of burnout.
Burnout is common and takes many forms
During the study, 7 of the 18 participants said they were experiencing diabetes-related burnout. All 18 participants said they had experienced it at some point in the previous year.
Participants described it as mental, emotional and physical exhaustion. If it persists, it can lead to feelings of detachment and helplessness in the face of illness.
One of the participants said: “It’s draining to constantly take care of myself and to always worry about everything I eat and do.”
Participants said that the “snowball” effect of different elements piling on top of the daily burden of self-managing diabetes can lead to burnout.
Risk factors include:
- Failing to achieve good glycemic control;
- Pressure from healthcare teams to achieve perfection and failure to take feelings into account;
- Personal life events;
- Lack of support from friends and relatives.
Participants observed that certain strategies, such as support from loved ones and healthcare teams and maintaining a positive attitude, can help prevent or overcome burnout.
Four profiles to better measure burnout
Based on the data from this study and other past studies, four profiles were defined to better measure and acknowledge burnout.
This profile can vary depending on a person’s mood, the season, current events, etc. The main goal is to find strategies to get closer to an engaged profile and strike a certain balance.
- Engaged profile: The person is dedicated to their own diabetes care and is not showing signs of exhaustion, detachment or helplessness.
- Exhausted profile: The person is engaged with their diabetes self-care and their support systems (relatives, friends, etc.), but describes feeling exhausted or burned out.
- Disengaged profile: The person is disengaged from their diabetes self-care, their identification with their type 1 diabetes and/or their support systems, but they are not showing signs of exhaustion or powerlessness.
- Burned-out profile: The person shows signs of mental, emotional and physical detachment from their diabetes self-care, support systems and identity with type 1 diabetes. This tends to be accompanied by exhaustion and/or powerlessness.
This study shows the importance of addressing this topic with people who are living with type 1 diabetes.
Healthcare teams should especially make sure they use an empathetic, no-pressure approach, and encourage their patients with type 1 diabetes to talk openly about their level of exhaustion or commitment and the support they’re getting. It’s also important that healthcare teams acknowledge the daily struggles faced by people with type 1 diabetes and adapt their goals accordingly.
The BETTER registry aims to collect information in order to better identify and measure the challenges of living with type 1 diabetes.
If you or your child are living with type 1 diabetes in Quebec, sign up for the registry here:
- Abdoli, S., et al. (2019) Experiences of Diabetes Burnout: A Qualitative Study Among People with Type 1 Diabetes. American Journal of Nursing. doi.org/10.1097/01.NAJ.0000615776
- Gordon, S. (2019). “Diabetes Burnout” is Real, Here’s How to Cope. Healthy Day News, December 10, 2019. https://consumer.healthday.com/diabetes-information-10/diabetes-management-news-180/diabetes-burnout-is-real-here-s-how-to-cope-752884.html. Accessed January 28, 2020.