Being a teenager is hard. Being a teenager with type 1 diabetes…well, it has its own challenges.
A couple of weekends ago I had the opportunity to volunteer as part of my local JDRF’s Teen Carnival. The event brought together about 42 teens with type 1 diabetes and their parents to encourage an open dialogue about their management of their diabetes.
The teens and the parents were broken up into separate rooms. The teens were given questions to discuss about their parents while the parents answered questions about their teens. The exercise was called the Tree of Trust. Answers were written anonymously on “leaves” and then hung on the tree for everyone to read. After the separate conversations, the parents and teens were brought back together. A local pediatric endocrinologist summarized the responses from both the parents and teens and provided recommendations based on his years of experience working with teens and adults in his practice, highlighting themes that were expressed during the session.
It was powerful to hear both the teen and parent perspective. Parents were reminded about the importance of giving their teen independence and not to be so quick to anger or blame when things don’t go well, while teens learned the importance of honest and open communication with their parents, even when they make mistakes. As I looked around the room from the back row where I sat, I saw parents and teens exchange knowing looks and sly smiles as different topics related to them and their relationship. While it’s challenging to manage your diabetes as a teen, everyone in the room had already taken a great step in the right direction just by being there and listening.
I was a moderator in the teen room and sat at a table with another moderator and 4 teens. As we talked about each of the questions, I was struck by how similar my struggles were as a teen. I remember the challenges of trying to fit in with my peers when my diabetes set me apart, of trying to be independent, and having so much to think about at all times.
I didn’t have the opportunity to participate in a program like the Tree of Trust when I was a teen. I think I had pretty good communication with my parents as a teen, but it still would have been an interesting exercise to go through together. Well since I can’t travel back in time, I decided to go through and answer the questions now, as a 27 year old, remembering my years as a teenager. I sent my mom a sampling of the questions that were asked at the session and had her answer them also.
Questions for the Teen
(so these are my responses about my parents, thinking back to when I was a teenager)
1. What do we do well as parents and what do we do with your T1d care that is successful? (I combined two questions since they’re so closely related).
You’ve done an amazing job since the day I was diagnosed of teaching me that I am not my diabetes, and that I can do anything I want to do even with my diabetes. You encouraged me to play sports, to go away to camp, to travel (and years later to study abroad), and just be myself. Whatever the situation, you found a way to make it work with my diabetes. This was such a strong message for me as a teen that I internalized growing up. You also allowed me to be independent while still being a concerned parent. You helped me when I needed help, but you encouraged me to take responsibility for myself and my diabetes.
I remember checking my number and shielding the number from you. I think it was because at the time, I wanted my privacy even when it came to my diabetes care. And I appreciate that most of the time you respected that and trusted me to do the right thing. You always just wanted me to be safe and healthy, you never got mad even when I was going through a rough time with trying to get my numbers under control.
2. What can we do differently with your T1D care?
I know that you’re just concerned, but it can be annoying to constantly ask me what my blood sugar number is, or remind me to check my blood sugar or to bolus. Most of the time I have already done it, and if I do miss it, it’s a lesson for me to learn. While I do appreciate the reminders occasionally, they don’t need to happen constantly. I also get annoyed when I say I don’t feel well and the first thing you’ll ask is what my number is. Not everything about my health is related to my diabetes, and usually I can tell the difference between not feeling well from being high or low or there being something else wrong.
Question for parents
(these are my mom’s responses about me)
1.What did I do well as a teen and what could I have done differently?
You wanted to be very independent with managing your diabetes from the very beginning which is most positive. Dad helped with the more technical aspects of the pump, ordering insulin etc. I helped with the logistics, wearing the pump in clothing, school lunches etc. I think counting carbs has been a challenge throughout the years.
2. What did I do with my t1d care that bugged you?
Nothing “bugged” me about your own t1d care. (ok, wiping your bloody finger on your case).
3. Why do you not trust us?
I’ve always trusted you. Double checking on t1d care would only be a sign of love and concern when a parent who does not have diabetes cannot “fix” this condition for their beloved child. It is not judgmental in any way. When you have a loving, respectful, trusting relationship, you work through things together.
4. What did I do with my T1D care that was successful?
Accepting with grace, courage, dignity and even humor, this unwanted and challenging aspect of your life. Taking steps in your life to find a way to help others with this same disease and other health issues. Using your gifts of introspection, insight, intelligence and sensitivity that shines through in all you do.
5. What did I do with my T1D care that disappointed you?
Nothing that you did with your t1d care disappointed me. You are, were and will forever be my hero.
I know how fortunate I am to have parents that have always been there to love, support, encourage, and believe in me in everything I do, including managing my diabetes. Being a teenager with diabetes was definitely challenging at times, but looking back, I can see how everything I went through made me and my relationship with my parents stronger in the end. I hope other teenagers and parents have the opportunity to go through a similar exercise as the Tree of Trust, or take it upon themselves to have a similar conversation.