Diabetes Burnout in Children and Parents
The constant stress of managing type 1 diabetes and the vigilance required can quickly lead to burnout. Learn how to recognize it and find the support you need.
Type 1 diabetes is one of the most common chronic medical conditions for children in the United States, and it comes with a variety of feelings – motivation, hope, fear, frustration, and, sometimes, burnout.
What is diabetes burnout?
Though diabetes burnout is not a medical diagnosis, it is very real if you are suffering from it. In a 2019 study, diabetes burnout is defined as “a psychological concept and condition … [Burnout] is debilitating and ongoing, often leading to challenges with self-management, suboptimal self-care, a high prevalence of diabetes-associated comorbidities and complications, a decreased quality of life, and increased health care costs.” The study suggests that diabetes burnout occurs in approximately 36% of adults with diabetes.
Common symptoms of diabetes burnout include:
Mental, physical, and emotional exhaustion
Detachment from support systems
Detachment from diabetes care
Detachment from self
Powerlessness in the ability to manage one’s own condition.
Who gets diabetes burnout?
The short answer is that everyone with diabetes can experience diabetes burnout. However, certain populations are more likely to experience it. As a nurse and certified diabetes care and education specialist, I have noticed that the following groups of people are more likely to be burned out:
Adults who have had diabetes for many years
Anyone who has a complicated medication and/or insulin regimen
Parents of young children who are unable to assist with their care
Jen Johnson, a parent of Julie Johnson, a teenager (16) with type 1 diabetes, said, “For us, our journey was different, I think, than most. Julie was diagnosed with autism at age 2, along with chromosome deletion, anxiety/mood disorder, scoliosis, and joint issues. So, burnout, I think, for me was just dealing with it all and just being tired.”
Julie agreed, adding, “There’s not much you can do to change having diabetes, so you just keep moving forward.”
Tips to ease the pain of burnout
If you are experiencing one or more of the symptoms listed above, there are several things you can do, including seeking professional help.
Self-care is not always about face masks, bubble baths, and massages. Sometimes, it is about changing your thought process, such as letting go of perfection, accepting your feelings as normal, and allowing yourself to take a break.
Emily Miller, a social worker at UP Health System in Marquette, Michigan, said that connection is a huge part of managing diabetes burnout. She said that caring for yourself or your child is often knowing that a team is there for you, that you are not alone.
Miller said that having a role model with diabetes is very helpful to children dealing with burnout.
“Having adults with diabetes on our team does help young adults know that they can have a future,” she said. “[Meeting] role models from a [diabetes] camp, such as older campers or camp counselors, can remind them they are not alone.”
Dr. Nellie Said, a pediatric endocrinology fellow at the University of Michigan, expanded on Miller’s advice.
“Especially for our teens: don’t be afraid to ask for help and know your limitations as to how much you can contribute to your diabetes care,” she said. “Yes, you are responsible for a little more than when you were younger, but your family can still step in to give you a mental break and support you on this journey.”
For teens experiencing burnout from all the devices, beeps, and notifications, a short technology break might be beneficial, she said. “It is not a bad idea to sometimes take a brief step away from technology and go back to the basics, letting your mind reset and coming back to your tools with a refreshed mindset.”
For Julie, 16, going to diabetes camp was a turning point in lessening her diabetes burnout. “I think going to camp and being with others who have diabetes has helped a lot,” she said. Julie also enjoys raising awareness of diabetes and feels that has helped her work through many of the feelings of diabetes burnout, too.
Parental diabetes burnout
What is most exhausting about caring for a child with type 1 diabetes? Is it the frustration with 3 a.m. wakeup calls? The frequent injections and fingersticks? It isn’t just that; it is the disruption of family lives, problematic child behavior, and an overall reduction in quality of life.
Studies indicate that parents of children with type 1 diabetes are just as liable as their children to experience diabetes burnout. A literature review of 34 studies on the subject estimated that more than one third of parents deal with some form of diabetes distress, which can lead to diabetes burnout.
Recognizing burnout is half the battle. Once you’ve recognized it, allow yourself some grace and be kind to yourself. Yes, it is important to ensure that your child is receiving their insulin or medication, but if you miscalculate the carbohydrates or the effect of exercise on your child’s blood sugar, it is helpful to remember that mistakes happen, and there are people who can support you.
“The first step is acknowledging that diabetes is a challenge but it is a new member of the family that is not going to go away,” Said advised. “The second step is that there is actually a lot of room for variation of care for our patients, as long as they are being managed safely. We by no means expect perfection as their medical team, so parents and kids should not either. The third step is realizing that they are not doing this alone: there is a ton of support out there, from their medical care team to the diabetes community – you just have to ask.”