My daughter Quinn was diagnosed with type 1 diabetes just shy of her fourth birthday. In those early years my husband and I, along with grandparents and school staff, were in charge of her diabetes care, including knowing what her blood sugar was and giving insulin for meals and snacks. I was the “captain of the ship,” and with me in charge, we were very on top of things.
When Quinn neared the end of elementary school and entered middle school, we were in uncharted territory. Her need for independence meant giving over care to her and trusting that she could self-manage. Of course, we were always a phone call or text away. We were still able to keep her diabetes management on track.
And then she hit the teen years, and suddenly diabetes management was almost entirely her own. Funny thing about teenagers, they want to do everything — including diabetes management — on their own!
I am so proud of how she juggles the demands of diabetes with schoolwork, extracurriculars, and, well, life. I know she is doing an awesome job, especially when I hear about some of her friends from camp who are constantly going into DKA (diabetic ketoacidosis, a complication of high blood sugar).
But she isn’t managing her diabetes in the “type A” way that I would manage her diabetes.
It got me thinking about why many teens become lax in their diabetes management, and why diabetes burnout seems to be almost universal in teenagers. Now, don’t think that because I’ve written a book or have a blog that I’ve got this diabetes thing 100 percent under control… I don’t! So I turned to my longtime friend Allison to try to figure this out, because not only is she a licensed therapist, but she was also diagnosed with T1D as a child.
Allison Nimlos, M.A., L.A.M.F.T., is a licensed associate marriage and family therapist and a diabetes health coach at Greater Than Counseling & Coaching in Minnesota. In the following Q&A, she helps me understand the whys and hows of diabetes burnout in teenagers. I figure that if it’s a struggle for us, then it’s a struggle for others. I hope that you can see my earnestness in wanting to help you and your teen while trying to find answers for my own teen and myself.
L: What is diabetes burnout?
A: In a nutshell, diabetes burnout is the frustration, fatigue, anxiety, overwhelm, etc., that comes as a part of living with a never-ending 24/7 disease. It’s incredibly common, occurring in around 40 percent of people with diabetes at any given time.
L: Why are teens susceptible to becoming burned out?
A: Just like anyone else, they are dealing with the rigors of managing a disease that is really pretty unforgiving. But unlike adults, they are also dealing with a still-developing prefrontal cortex while simultaneously learning to take on a bunch of other responsibilities in life, like rigorous academics, a packed extracurricular schedule, peer pressure, and social obligations, doing their own laundry, etc. It’s a lot for a teen to keep up with on the best of days, but when you add a complicated disease on top, it can sometimes be too much to handle alone.
L: Is becoming lax in their diabetes care a form of burnout?
A: It can be. Many people cope with the stress and frustration of managing diabetes by pushing away some of that responsibility. It’s a coping mechanism. It’s a maladaptive way of coping, but it’s coping nonetheless.
L: Is diabetes burnout a form of rebellion? Or do they just have so much going on that they can’t juggle everything at once? Is diabetes the thing that just has to give?
A: The difference between burnout and rebellion is that rebellion is done very intentionally, as a means to manipulate and get something they want. Burnout is more of a response; it’s just a natural reaction to something that’s going on. Most teens who are in burnout who slow down or stop aspects of their management aren’t doing it as a way to assert their identity or to “prove something” to their parents; it’s just that they’re having a difficult time managing things. You could think of it as a cry for help.
Teens can also become susceptible to burnout because they actually are trying very hard to manage their diabetes, and they are afraid of disappointing their parents. It doesn’t always mean they don’t care; sometimes it’s because they care so much and are frustrated that their efforts aren’t showing in the results.
L: Does it make a difference whether the teen was diagnosed as a young child or more recently?
A: Surprisingly, no. People may think that the longer you have it, the more “used to it” you are, but everything is changing during the teenage years. They are taking on more and more responsibility, and therefore their relationship with diabetes is changing. For a child who’s young, parents are doing the bulk of the thinking and doing, and so diabetes plays a relatively small role. As a teen takes on more of the day-to-day tasks, they can experience diabetes differently.
L: What advice do you have for parents who are frustrated that their teens are no longer testing blood sugar as frequently as they should, aren’t bolusing for the foods they eat, and are ignoring the alarms on their CGM (continuous glucose monitor)?
A: Again, most teens aren’t waking up and saying, “I want to tick off my parents by not managing my diabetes.” Diabetes management can seem straightforward for adults, but for teenagers, they have a lot of things competing for their attention, and they may be having a difficult time figuring out how to make that integration. Some of it comes with time and experience, trying out different routines, and some of it comes from maturity and a more developed sense of why diabetes management tasks need to take precedence. But when you’re a 16-year-old guy trying to impress a girl, sticking yourself with a needle is going to feel low on the priority list.
L: How can parents help get their teens back on track without nagging them?
A: Part of the work is preventing them from getting off track to begin with, and that comes with a lot of communication and agreements regarding what you are and aren’t going to give over to your teen as far as responsibility goes. Trust comes from demonstrations, and teens can earn more responsibility by demonstrating that they are trustworthy. Teens tend to lose responsibility when they demonstrate they aren’t trustworthy; it’s a natural consequence. Punitive consequences, on the other hand, such as taking away cell phones, rarely work because it not only doesn’t solve anything, it embitters the teen. Natural consequences, such as a parent showing up at a teen’s friend’s house to check the teen’s blood sugar, can be pretty motivating!
L: What can parents do on their end not to be so frustrated? For instance, I don’t get mad if my daughter’s CGM alarms in the night and I have to get up to deal with it, but I do get annoyed if it’s because she didn’t look at her CGM and deal with it before bedtime, and waking me up could have been avoided.
A: I am reminded of what a nurse said to me when my son was in the NICU after he was born: “No one graduates from high school in the NICU.” Basically, your teen will eventually get the hang of it. They will learn, they will succeed. Be patient. Get your own support, whether that’s from a counselor, educator, or a peer support group.
L: Is it enough for their self-management to be “good enough” even if it’s not great?
A: I think as long as they are not in imminent danger, that might be the expectation you need on certain days. Our “best” can fluctuate from day to day, and so it can be helpful to have that grace and flexibility to know that not every day is going to be a 70 percent time-in-range day, and that’s okay. But we also don’t need to approach life from the expectation that mediocre is “as good as it can get.” Teens can do really well managing diabetes, and teens can also have a really hard time managing well. It isn’t necessarily an either/or, but a spectrum.
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.