Jodi Riseberg was used to worrying about her three kids, but when her daughter Lily was diagnosed with type 1 diabetes (T1D) in November 2016, her worry went “off the charts.”
“I try to be calm and collected around my daughter, but I’m constantly worried. You hear about sickness and disease happening all the time to others, but never in a million years did I think it would happen to my family. It has had such a profound effect on me that I have researched and read countless blogs, books, and articles. I have immersed myself in everything diabetes and am learning more every day.”
Research has shown that approximately one-third of parents of kids with T1D report severe emotional distress at the time their child was diagnosed, and 20 percent report high levels of emotional distress one to four years after diagnosis.
Nicole Johnson, M.P.H., M.A., D.Ph., JDRF’s National Director of Mission, has always been interested in the psychosocial aspects of diabetes. Her dissertation examined diabetes-related distress in parents of teens with T1D. The research found that diabetes-related distress is common among parents of teens diagnosed with T1D and is linked with parent psychosocial variables (depressive symptoms, emotional support), parenting style, teen glycemic control, and number of low blood-sugar episodes.
“A large percentage of parents [in the study] personalized diabetes. Some talked about the A1c as the ‘Good Mommy Award’. This approach creates a lot of pressure for the parents and children, and if the parents aren’t coping well, then the children can’t cope well because they are absorbing the stress,” according to Dr. Johnson.
Cassie Stevens, whose son Will has T1D says, “The sleep deprivation and financial burden take their toll, but the almost subconscious, constant fear is probably the worst part. I don’t let Will know that I’m always afraid.”
Dr. Johnson’s research determined that the best approach is collaborative. Parents and teens need to experience (perceived) failure together. An example of this could be trying to determine the right snack before or after an athletic event and ending up with an undesirable result. When parents and teens work through these moments together, it can build the relationship and ultimately lead to more positive experiences with diabetes.
The Diabetes Empowerment Foundation, co-founded by Dr. Johnson, “seeks to empower people living with diabetes to live positive, productive, limitless lives.” The foundation includes an online program to help parents who are struggling with T1D teens. Parents can access a scale to help determine their level of stress and recommendations on how to manage the stress.
Stefanie Sonico’s son was diagnosed in 1987 when he was 20 months old. Today, she moderates for JDRF’s Online Diabetes Support Team (ODST) and says many of the parents’ questions relate to stress. Her son is now 32 years old, and she says the constant worry is always there. Over the years, she has learned to take things one day at a time and says, “If you look at just one number and freak out, you’ll be a mess because it is certainly a marathon, not a sprint.”