Transitioning out of Pediatric Diabetes Management: Tips for Young Adults and Parents
By Kirsten Ellis
For the more than 350,000 young Americans living with diabetes, leaving home for work or college involves more than moving into their own place or navigating an environment of all-nighters, partying, and eating junk food. It also means changing providers and taking on the management of their care, sometimes for the first time.
“It’s so much planning, preparing, not getting caught without an insulin supply, and being on top of double checking your insurance coverage,” says Krystle Samai, Vice President of Mission at The Diabetes Link, which provides peer support communities and resources to young adults ages 17 to 30 who live with diabetes. “There’s the burden of self-advocacy. When you’re a child, your parents often do that for you.”
She adds, “As a young adult, you’re learning to do it for yourself. And when it’s life or death, it can feel really scary.”
Marissa Town was diagnosed with type 1 diabetes just after her second birthday. Her parents created Children with Diabetes, a nonprofit offering resources and support. Town, a nurse and Certified Diabetes Care and Education Specialist, is the organization’s clinical director.
Despite spending most of her childhood learning about her diabetes and gradually taking on more responsibility for her care, Town still struggled when transitioning to adult care. At one intake appointment, she felt judged and dismissed. She describes the appointment as a “total disaster,” sharing that she felt shamed for the way she managed her diabetes, with the endocrinologist questioning the frequency at which she checked her blood sugar levels.
“Many adult endocrinologists do not have as much experience with type 1 diabetes [as it is much less common than type 2 diabetes and often is diagnosed in childhood], and you can get lost in the shuffle in adult care,” Town shares. “Advocate for yourself and shop around until you find the right provider for you.”
Taking over your care on campus
For teens heading to college, learning about potential accommodations—and how to ask for them—is an important way to manage your diabetes as an adult.
Accommodations may include registering early for classes so that you can design a schedule suited to your body’s needs, delaying an exam if your blood sugar levels are off, or getting permission to bring food or a drink to class or exams to keep blood sugar under control.
Some teens can feel intimidated by a school’s bureaucracy. To help combat that, The Diabetes Link offers an online program, “Off to College,” teaching students and their families how to make the most of their college’s disability services.
Slowly shifting responsibilities
Samai, who lives with type 1 diabetes, stresses the importance of “parenting for independence”—empowering young adults to make decisions and advocate for themselves, while continuing to offer support.
For instance, encourage your child to take over reordering their own supplies or medications, or have your child begin making their own phone calls to set up appointments and have medical needs addressed. You can still remind them if they forget, and offer to be on the phone line to serve as backup and support.
Having that backup was key for Town. She already managed most of her diabetes care when starting college, but her parents continued to help by ordering her pump supplies. “It can be very overwhelming to take on all of the things at once, so having them to help me learn how to navigate our health care system was invaluable,” she says.
Offering support from afar
Shared apps allow parents to monitor their child’s continuous glucose monitor data.
Samai recommends families work together to create a “communication contract” with a contingency plan if they cannot reach their child during a blood sugar dip—for instance, calling a roommate or notifying campus security.
Having two separate text chains or conversations between parents and the young adult—with one focused only on diabetes—is a popular method as well.
“You’re still a kid, and you still have a rich, full life,” Samai says. “It’s okay to put a diabetes thread on the side.”
Setting boundaries and finding community
Keeping a clear boundary between conversations about diabetes and everything else can help with diabetes burnout—feeling mentally, physically, and emotionally tired from the work needed to manage diabetes.
“There’s a lot of ‘I don’t want to do this, this sucks, I didn’t pick this disease,’” Samai says. “We work to empower our community around how and when to take a healthy break.”
That might mean limiting glucose monitor alerts or temporarily turning them off and having a loved one monitor them for you through a shared app, or only checking your blood sugar data every six hours, or before exercise or driving.
Finding community is important, too. Town says that mental health problems like burnout, anxiety, and depression often crop up in young adulthood, and a chronic health condition can exacerbate those issues.
“One of the best ways to help people develop a positive relationship with their diabetes and feel more confident around their peers is to meet other people with diabetes,” she shares, listing examples such as Children With Diabetes’ Friends for Life conferences, diabetes camps, and local support groups or events. “Meeting other people with diabetes and normalizing the devices and care tasks makes a huge difference.”