Diabetes and Teens: How To Get the Best Out of Healthcare Visits

Let me tell you about a recent appointment I had with a 15-year-old boy newly diagnosed with type 1 diabetes. Let’s call him “The Dude.” I always spend at least part of the visit with a teen without the parents in the room to allow time for honest questions and answers – and to clarify that these visits are about them and that their voices are heard.

Me: How’s it going?

The Dude: *Shrugs*

Me: Let’s forget about diabetes for a little bit. Just give me a rundown on life. What’s been going on lately?

The Dude: I haven’t been doing much at all. I don’t go out with friends. I hate taking my insulin with me. I don’t know how to keep it on me and not forget about it. If my phone isn’t near me, my CGM is a pain in the ass since it keeps alarming. Then my mom and dad keep texting me since they get my CGM alerts too. I just want to hang out with my friends without all the hassle.

The Dude’s comments about his activities illustrate how diabetes impacts every facet of life, even if we don’t want to admit it. Just these few minutes of conversation provide insight into his frame of mind, frustrations, and struggles. Later on in the conversation, we talked about stigma, diabetes education, age-related responsibilities, and wanting to be more independent – all important topics when talking with teens.

In my 25 years as a certified diabetes care and education specialist (CDCES), I’ve realized that giving practical advice is key to establishing a trusting relationship without judgment. When working with teens, I like to take a “big picture” approach during visits. I want to discuss key education topics, how long different age groups take to attain certain skills, and the balance between the burgeoning independence of teens and the role of their parents or caregivers. 

The curriculum outline that every CDCES uses is only a template. Knowing how a typical education visit is structured is helpful to set the stage, but I would much rather encourage the teen to run the show and talk about whatever questions or situations they wish to discuss. How the conversation develops depends on the teen I’m working with and what my “gut” says will be the right balance of information for them and their parents. 

Here’s an example of how it went with The Dude when asking about his CGM alerts. 

The Dude: My alerts are pretty tight. My parents want to know when I’m below 80 and above 160.

Me: What action do you take when these alerts go off?

The Dude: Nothing. I just wait.

Me: When would you take action?

The Dude: If I’m dropping and below 70 or above 200.

Me: Should we change your alerts so they ring? And maybe turn on the fall rate?

The Dude: That’s a good idea. Less beeps and then it wouldn’t be such a big deal to have my phone around.

Me: How do you want your parents involved with the CGM alerts?

The Dude: They’re not going to change them, but I don’t like that they remind me.

Me:  If you had to pick below 70 or over 200, which one would you prefer your parents to work with you on?

The Dude: I guess low, since that can lead to me passing out if I let it keep going low.

One of the most important goals for these visits is that the teenager knows the healthcare professional they’re seeing is listening and answering their questions. Knowing that they are willing to listen as well as advise should empower you to advocate for your health and well-being. 

This means laying it all out there. When your provider asks a question, be honest. No one will make fun of you or judge you (and if they do, it might be time to look for someone else). As a healthcare provider, my job is to make every one of my patients able to live their best lives with diabetes.

How to talk about diabetes as a teen

For teenagers, being different at school can feel like the kiss of death. That’s why it’s important to learn how to prepare for and deal with talking to peers about diabetes questions, especially if using wearable technology like a continuous glucose monitor (CGM) or insulin pump. 

How do you want to talk about your diabetes, if asked? What is it that you want people to know (or not know)? These are questions I sometimes ask my teenage patients when it feels right. Hopefully, I have already established the kind of relationship with the patient I had with “The Dude” so they will feel comfortable enough to answer my questions. Together, we can develop a plan for how to talk about diabetes in a way they want people to see them.   

Our job as healthcare providers is to create reasonable goals that can help teens feel more comfortable and reduce stress around diabetes management. If you’re worried about visibility, pumps and CGMs can easily be hidden under clothing.

Another example is looking at the number of alerts and alarms set on devices. Do all the alarms need to be on? Can some be on vibrate? While your beeps may not register with anyone else but you, having them go off too often can lead to unwanted attention. 

Diabetes self-management education and support: what to expect

A global consensus report on type 1 diabetes highlights four critical times that a person with type 1 should receive diabetes self-management education and support (DSMES): at diagnosis, at least once annually following diagnosis, if diabetes complications arise, and if transitions in life or care occur.  

Core content areas for DSMES for all people with diabetes include:

• The changes that occur with diabetes and treatment options
• Healthy coping skills
• Healthy eating
• Being active
• Taking recommended medication
• Monitoring blood sugar 
• Preventing and treating complications
• Problem-solving and behavior-change strategies

When I talk about DSMES with teens, it’s important to establish that no topic is taboo or considered embarrassing. It’s also crucial to find out what areas of life matter most to them. A 2017 study that reviewed web posts of teens with diabetes found the most commonly mentioned ones were:

• Interactions with peers and teachers (wanting to talk to someone who understands) 
• Emotional well-being 
• Blood glucose management 
• Physical well-being
• Education and motivation of others
• Family interactions
• Academic achievement

These all fit within the core content areas for DSMES and illustrate the importance of focusing on what teens want to know – not what we think they already know or should know. 

Along with talking about whatever is on the teen’s mind, I usually discuss the following topics during visits:

• How diabetes affects school, sports, and hanging out with friends, and how to make them work
• Whether the teen is using alcohol or drugs. If they are, discussing how substance use affects diabetes self-care and options to reduce the risk of extremely low or high glucose levels that may result from engaging in these behaviors

Preparing for adulthood with diabetes

An important aspect for teens and their parents or caregivers to consider and prepare for is the transition of diabetes care from one healthcare provider to another. Typically, most pediatric practices transfer young people to adult care after age 18. However, some pediatric practices cover them until a postsecondary education (like university or trade school) is completed.

Regardless of when the transfer occurs, the goal is preparing for independence. The first step is integrating diabetes self-management topics with age-related responsibilities and tasks (see here for a breakdown). Discussing how diabetes affects you in real life with your healthcare team helps you stay safe when you start to handle the majority of the diabetes decisions on your own.   

The National Alliance to Advance Adolescent Health created a resource center called Got Transition to help improve transition care for young people with diabetes. The website includes frequently asked questions as well as readiness checklists for both youth and parents and caregivers. 

Although these are typically used during clinical visits, I also recommend teens with diabetes and their caregivers use these checklists themselves to assess readiness. The information can help teens figure out how to become more independent and better direct conversations with their healthcare team.

The bottom line 

Good communication skills are essential for healthcare providers, especially those who treat children and teenagers. Living with diabetes is hard, but healthcare providers should ask how it is for the teens they treat as diabetes can look different for everyone.

DSMES needs to revolve around problem-solving to allow teens to do things they want to do, as well as define caregivers’ roles in diabetes management. DSMES visits are meant to provide help in developing strategies to handle day-to-day activities without diabetes feeling like too much of a burden.

Healthcare visits do not have to be anxiety-ridden or “a waste of time.” I get it, they may not be your favorite thing to do, but even independent adults need them. Also, keep in mind that being an expert on diabetes self-management takes time. Think of these visits as a learning tool to gain better insight and empower yourself to learn about and manage your diabetes in a healthy and safe way.  

Learn more about adolescence and managing diabetes here:

• Bullying, Stigma, and Diabetes at School
• Adolescence, Stigma, and Owning Diabetes
• Transitioning Care in the Teenage Years