Navigating Your Teenager's Diabetes Diagnosis
By Moira McCarthy
The importance of communication, returning to a “new normal”, overcoming fear, and finding community for a newly diagnosed teen
Is there a “worse age” to be diagnosed with diabetes? Certainly there is no acceptable age for that news. But my daughter, diagnosed with type 1 diabetes 22 years ago as a freshly minted kindergartener, thinks she knows. “Mom,” she said to me once when a friend was diagnosed, “The teen years have to be the most unfair years of all for a new diagnosis.”
That might very well be true. After all, the teen years for all families are a time of great transition. Kids begin pushing away from their parents and toward more freedom. Parents face a whole new slew of worries (hormones [often for both of them!], social pressures, overall safety in this world). Throw a diabetes diagnosis into the mix – something that almost automatically pushes a parent to create more attachment to a child and have more worries –and you’ve got a doozy of a challenge ahead.
But here’s the good news: weaving diabetes into the life of an active, growing teen working toward independence absolutely can be done. It takes teamwork, patience, and totally open (and judgment-free) communication. Hard work by both the teen and parents will lead to not just a strong family unit, but a independent person who will live a full life despite diabetes.
Here are some steps to consider as you move along this new, winding (but totally drivable!) road called life with diabetes and a teen.
Some teens want to run to their room, slam the door and sulk alone when a fingernail breaks. So a diabetes diagnosis might not send them straight to your side for a deep talk. And yet, they need to be there. In the early months it is vital that parents stay in the loop on diabetes care and how things are going. Many teens want independence from the get-go, and that’s not all bad. But at the start (or from a starting point after a teen has perhaps faced a struggle), parents should do their best to be an active part of the regular diabetes conversation.
What does that mean? It does not mean (as tempting as it is) asking “Are you low?” or “have you bolused?” every time you see them. It also does not mean your teen huffing “I’m FINE, now mind your own business!” and stomping off to their room. In between those two extremes is the sweet spot for the newly diagnosed teen and family.
Having two appointments with the diabetes care team
First, ideally, your teen’s endocrine team should split appointments into two segments: the one you sit in on for updates and learning, and the one when your teen gets time alone to talk in privacy about their concerns and goals in their diabetes life. It is important for your teen to not only have a place to discuss all this privately, but also to build their own confidence in medical communication.
Set a time each day to discuss diabetes
At home, in the early months, let your teen know that while you’ll both have to speak often about diabetes, that level of talk is temporary, and as time goes on and your teen becomes more settled in their new routine, you won’t have to have these deep discussions as often. A good idea is to set a time each day to review, rather than have it pop up all day long. Parents may keep a notepad of questions they may have each day, and as best they can, respect the planned time for discussion. Teens, in exchange, should agree to bring up questions or issues with parents whenever they need to. Respecting their space and time while allowing them access to you constantly, at the start, can create a nice balance.
Share the news with friends, teams, and community
And what about them communicating all this to their own community? Many teens want to hunker down and keep it private. This is not the best option. Teens need to understand – and then experience – that the sooner they share the diabetes news, the less of a big deal it is. It is up to them to communicate with their peer groups, but you can help them with sound bytes. For instance, if they are on a school team or in a club, they can practice how to share the news with their group. “So I was diagnosed with diabetes, team,” they might say, “and I want you to know that while I have to take some extra steps to manage my blood sugar, it is not going to impact our team effort. I’m adjusting now, and I know I have all your backs.” You can also suggest your teen have a get-together at your house: a pizza party or whatever they’d normally do, and give your teen a chance to fill in all their close friends. (That event can also set the tone that your child can still eat the things and do the things they did before diabetes; just with some extra steps. It is important for their friends to understand this).
Talk to the school
As for school, the parent should consider initiating that discussion and letting the school – and each teacher – know what is going on and what accommodations your teen needs. Have your teen sit in on those meetings (so they can both voice their needs and learn to advocate), but you, as the parent should lead this conversation.
Practice good language
Blood sugars are not “good” or “bad”; they are “high,” “low” or “in-range.” Your teen isn’t “failing” if they slip up; rather they are a mere mortal doing their best in a challenging situation. Words matter.
Getting Back to Life as it Was
Don’t let diabetes change life decisions. Make a plan.
“Nothing is ever going to be the same again.” Teens (and parents) can feel this deeply after diagnosis. It is important for both of you to see that you can still take part in the things you love about life. Get your teen back in the swing right away. Back to school, sports and yes: an independent social life. A good practice for both you and your teen is this: when an event, situation or opportunity arises, ask yourself, “What would my answer be without diabetes on board?” If your answer would be yes, just do it. Encourage your teen – with you in the loop – to reach out to their medical team for a plan for anything they have coming up: a big sports event, the prom, a music festival and even an overnight trip with friends or school. There is always a way to make it happen. Each time your teen does something “normal,” you and your teen will adapt a bit. Over time, you’ll settle into your “new normal.”
It is important here for parents to work at checking their own fear at the door. Of course parents worry: it’s in our DNA. But never let your own fear hold your teen back from living the life and doing the things they love. You will find, over time, trust will replace that fear.
Fear is absolutely a complication of diabetes, but it is a complication with a cure. Facing fear head on from the start and using the support of your medical team and education to vanquish it leads to a better life with diabetes on board.
Encourage teens to express fears, and raise them with their medical team
Let’s talk about your teen’s fears first. Teens like to play it cool – like nothing bothers them. But a diabetes diagnoses is frightening, and your teen may hear or read things that are not necessarily true in 2019. Encourage your teen to write down any fears and share them with their medical team. There, they can learn why something might not be worth being fearful over. Teens hear a lot via social media today. Help them filter where they look and what they read. And help them learn that if they do see something that scares them, their medical team is available to talk things through.
Parental fear is another level fear. After all, we care more for them than we even do for ourselves. Some ideas to help your fears include limiting your social media sources to vetted and trusted sites. Find in-person support too; speaking to other experienced parents in real time can give you confidence in most situations. And remember, don’t let your fear hold back your child.
Building Community/Becoming an Advocate
Find support in other people with diabetes
Not every teen is cut out for the advocacy role in diabetes life. However, every teen is – whether they know it or not – in need of community. Finding your teen a posse that gets it --folks who live well with diabetes on board and who know first hand the struggles – is one of the best tools you can hand them. Diabetes camp, as much as they might cringe at the notion, is an excellent way to make this happen. At camp, away from you and away from their “regular world friends,” teens experience life around those who truly “get it.” Those camp relationships carry on through the year and even throughout life. Find a way to make it happen. Your teen needs a circle of friends who get it that is for them and them alone.
As for advocating and speaking out, some teens find power in making a difference. Programs such as JDRF’s Promise to Remember Me Campaign and ADA’s Call to Congress are accessible and interesting to many teens. Creating a walk team for a diabetes charity (e.g., JDRF, ADA) or taking on a bike ride can be a great way for teens to involve their school, team and neighborhood friends in diabetes advocacy. Share opportunities with your teen and encourage them. But in the end, let it always be their choice. After all, it is their life, their voice and their diabetes.
A new diabetes diagnosis in the teen year seems wickedly unfair, as my daughter said. But with planning, patience and more than a few leaps of faith, you can help your teen embrace life and charge at all their dreams – despite diabetes.
This article is a part of a series to support adolescents with diabetes funded in part by The Ella Fitzgerald Charitable Foundation.