Having type 1 diabetes is often described as a full-time job. But if that’s the case, where is the vacation time? Diabetes doesn’t ever take a day off and, just like working overtime for months with no break in sight, this can often lead to burnout.
In the type 1 world, “diabetes burnout” refers to a phase when typically responsible and cooperative kids suddenly become fed up with or lax about type 1 care. Frustration with diabetes can strike at any age, but it’s more likely to be experienced by tweens and teens, especially those who have dealt with diabetes for a long time. Since burnout is a normal and often even inevitable part of having type 1, being prepared for it can help you deal with it and move past it more effectively.
Over the past few years, Wendy, whose 11-year-old daughter Abby was age 4 when diagnosed, says she’s learned to pick up on a few telltale signs that Abby is feeling overwhelmed and exhausted by the disease. “We know it’s burnout when she becomes moody and short-tempered and starts to put up a fuss about testing,” she explains. It’s also at these times that her daughter starts to question why everyone else doesn’t have to go through the same daily care routines she does.
Complaining about diabetes or displaying frustration with a specific aspect of blood sugar management are common signs of burnout. Additionally, tweens and teens who have become responsible for certain aspects of their care, such as blood sugar checks, may begin to slip in carrying out these tasks, says psychologist Korey Hood, Ph.D., associate professor of pediatrics at the University of California, San Francisco, and staff psychologist at UCSF’s Madison Diabetes Center.
Can It Be Prevented?
To head off burnout, Hood recommends keeping the lines of communication open with children. “When frustration and anger about diabetes are bottled up, they tend to come out in a not-so-nice way,” says Hood. Instead, parents should provide a small release by “communicating on a daily basis about diabetes in order to give the child an outlet for expressing emotions before they build up.” This can be accomplished by regularly asking the simple question, “How did it go with the diabetes today?”
When a child shares his or her feelings, offer validation. “When Abby gets frustrated, just acknowledging it by agreeing — ‘I know it stinks, but we have to do all this in order to keep you healthy’ — seems to really help,” shares Wendy.
Checking your own attitudes about diabetes is also important. Nagging about blood sugars or voicing annoyance with high or low readings can contribute to burnout, so — as much as possible — remove the emotion from diabetes care tasks, Hood advises. “Anger and frustration don’t help anyone. If you see a high reading, just consider it helpful data about what to do next.”
When, despite her best efforts, Abby’s frustrations bloom into full-fledged burnout, Wendy provides support by relieving her daughter of care duties until she feels better. “For her, or any other child with diabetes, there’s a lot to be responsible for: She’s checking her blood sugar before lunch and gym, watching what she eats. During these times, we try to take as many of these burdens from her as we possibly can.”
At home, Wendy and her husband will check blood sugar, count carbs in foods, and continue to oversee insulin. At school, Wendy gets in touch with the nurse to let her know what’s going on and to request similar extra care.
Hood agrees with this support strategy, even for older children. “Just letting your teenager know, ‘Hey, I ordered your supplies and set them up in your cabinet for you,’ can help a child to feel so much more supported.”
Other Helpful Tactics for Getting Through Burnout:
- Limit questions. “If you ask a child with burnout, ‘It’s time for your insulin injection, does that sound like a good plan?’ you may be asking for trouble,” says Hood. When a child complains about yet another shot or check, it’s important to acknowledge the complaint, but still go ahead with the task in a matter-of-fact manner. If you do offer a choice, limit it to “I can do this or you can do this. Which one is good for you?”
- Offer positive reinforcement. For kids putting up resistance, consider adding extra perks for following care routines, suggests Hood, such as extra computer time. “Is it bribery? Well, as humans, we seem programmed to respond to this,” he explains. Once burnout wanes and there’s more willingness, extra perks can be scaled back.
- Make the future brighter. To move through burnout, find a way to associate more positive feelings with type 1. For Abby, the bright side is a diabetes camp she attends twice a year. “She is counting down the days to camp. It really helps to have something so wonderful to look forward to,” says Wendy. Hood finds that trying out new diabetes technology or even just picking out different color skins for a child’s pump can provide excitement.
Remember the Basics
Getting through burnout can seem daunting, but it may boil down to one simple principle. When asked what she wants from her parents when she’s experiencing burnout, Abby sums it up with a single request: “I want the feeling of getting a big hug.”
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.