All July, the Joslin Blog is highlighting stories about taking care of yourself emotionally. This story was originally posted on March 3, 2014.
Growing up with type 1 diabetes adds an extra burden of responsibility to an already overwhelmed teen. In many cases, these teens have had to deal with insulin injections, carb counting, and the fear of overnight lows for years. It’s very likely that at some point, they’ll just want to quit. But type 1 diabetes isn’t like Girl Scouts or soccer or any interest a teen might outgrow. Throw into the mix shifting blood glucose numbers and social issues related to being different from peers, and frustration with the situation can lead to something called diabetes burnout.
Anyone with diabetes is subject to burnout—this isn’t a phenomenon unique to being a teenager. But in these cases parents may mistakenly read the situation as a form of rebellion.
“I think teenagers are particularly prone to it,” said Jessica Markowitz, Ph.D, Clinical Psychologist in the Pediatric, Adolescent and Young Adult Programs and Research Associate at Joslin Diabetes Center. “They have so much going on in their lives and they would much rather think about school and friends and relationships and sports than diabetes, so diabetes can fall to the bottom of their priority list.”
Some signs of diabetes burnout include higher than usual blood glucose readings and higher A1Cs, a result of not taking enough insulin and not checking blood glucose frequently enough. These can be accompanied by parents needing to give their children more reminders for taking insulin, and more negative emotions surrounding diabetes care in general.
Markowitz suggests that one of the causes of diabetes burnout is teens having too much responsibility in caring for their own diabetes.
“Teenagers have a lot of autonomy in other areas of their lives and they take on a lot of autonomy in their diabetes care as well,” said Markowitz. “So oftentimes parents see their teen being responsible and they trust that they are taking care of their diabetes as well.” But Markowitz and the Pediatrics department at Joslin emphasize the importance of the family being involved in diabetes care for as long as possible to make sure the teen with diabetes doesn’t feel overwhelmed by his or her care.
So how can a parent help without feeling intrusive? Markowitz suggests at the very least “taking an upper level management position” in the diabetes care.
“We want parents to stay involved, but we don’t want to increase family conflict. I don’t want the parents to be sneaky,” said Markowitz. “I don’t want them to look at the kid’s meter without the kid knowing. If the parent can open up a conversation about, ‘how can I help even if it’s a small thing, please let me know,’ and then to say, ‘I would really like to be able to look at your meter at night. I want you to know I’m doing it, but we don’t always have to talk about it. I want to make sure you’re healthy and I want to support you in your diabetes management.’ ”
And if that doesn’t work, try taking back some of the responsibility for diabetes care, particularly for younger children. Markowitz says a common age at which families let kids take on more diabetes responsibility is around 10 years old—a time when children start doing more things on their own in other areas of their lives. But be wary of giving over all the responsibility for diabetes care right away. Doling out a little at a time might be the best way to prevent diabetes burnout in teenagers.
If a family is noticing increased conflict surrounding diabetes care, Markowitz suggests going to see a psychologist, one who either specializes in diabetes specifically, or generally in chronic disease management, preferably one with a focus on children and teenagers. Parents with children who have diabetes living in the New England area are in close proximity to Joslin, which houses two Pediatric Behavioral and Mental Health professionals, Markowitz and Kara Harrington, Ph.D. The Joslin Adult Clinic is home to three psychologists, one social worker, and one psychiatrist. There are also online resources like Glu and Children with Diabetes for people further from Boston where families can connect and find more information.
Of course, there could be reasons other than burnout fueling the rising blood glucose and A1C readings. Teenage years come with significant physical changes, which could lead to a need for more insulin. In this case, a diabetes provider may adjust the carb to insulin ratio and/or your basal insulin to improve diabetes management.
And sometimes what seems like diabetes burnout can be masking a much more serious problem, often referred to as diabulimia. Diabulimia refers to eating disorder symptoms and often involves people with type 1 diabetes purposefully skipping or reducing insulin doses to lose weight. If this behavior continues, the person with diabetes runs the risk of hospitalization because of diabetic ketoacidosis, a result of the breakdown of muscle and fat stores. Diabetic ketoacidosis is a medical crisis and can be fatal.
Some of the symptoms of an eating disorder in diabetes include elevated A1C, no blood glucose checking, changes in weight, changes in eating, or diabetic ketoacidosis that’s unexplained, says Ann Goebel-Fabbri, Ph.D., one of the clinical psychologists in the Adult Clinic. “If you notice these symptoms, then the situation is something to try and get a greater understanding about. Contact your healthcare provider and mental health treaters who understand diabetes.”
To make an appointment with a mental health provider in the Pediatric, Adolescent and Young Adult Programs, call (617) 732-2603. To make an appointment with a mental health provider in the Adult Clinic call 617-309-2594.