Recording artist Nick Jonas, 26, formerly part of teen sensation The Jonas Brothers, has become a serious solo performer in his own right. His singing, acting and touring career has taken off, all while he has successfully managed his Type 1 diabetes. Diagnosed at 13 while on tour, he quickly adopted a positive attitude and commitment to managing his disease and not letting it derail the pursuit of his dreams. Six years ago, Nick started using a continuous glucose monitor (CGM). He has also partnered with Dexcom, Inc., a maker of CGM technology, to raise awareness of the benefits of CGMs.
In addition, Nick is a co-founder of BEYOND TYPE 1, a new nonprofit organization dedicated to changing the conversation around diabetes. BEYOND TYPE 1 aims to be provocative, inclusive and disruptive, building a community to combat an isolating and confusing disease and help eradicate the stigma of living with a chronic illness. BEYOND TYPE 1 plans collaborations, special events and use of technology and social media to educate, raise awareness and raise funds for research to find a cure. According to Nick, the group will create a community for diabetics where they can share real-life stories about how they are living beyond Type 1 diabetes and how it has not slowed them down. “We have a long way to go in the education of both Type 1 and Type 2 diabetes,” he says, “and in that lack of knowledge is the even harsher reality that we are still very far from a cure.”
DSM: How has living with Type 1 diabetes changed for you over the last 12 years?
NJ: Mostly in my responsibilities, my taking ownership of it. From day one, I wanted to take care of myself and not rely on other people. Being diagnosed was definitely one of the most frightening moments of my life. I was 13…I started seeing the change physically, 20 pounds in two weeks. I was really irritable, just drained overall. I was scared that I wouldn’t get to do what I loved, all these dreams I had would just end. So I really made a commitment to myself that I would take control and not let it slow me down.
DSM: How do you manage a grueling schedule and diabetes at the same time?
NJ: I try to stay one step ahead, knowing where I’m going, having all of the supplies I need. It’s a daily struggle, it’s not all figured out. It requires attention.
DSM: As your career evolves, how do you see your diabetes advocacy evolving?
NJ: Creatively, it’s the ability to know I’m OK and to be able to live with something and be better. I’m being transparent from a new angle, sharing the tools that have helped me. Advocacy drives me, being able to help other people and building a community to talk about it.
DSM: Has having diabetes made you stronger?
NJ: Definitely, it has made me incredibly strong as a person and has been a big contributor to my character.
DSM: What are the benefits of using a CGM?
NJ: I started using Dexcom CGM because I needed more information, more numbers. Because of my very unpredictable life, it eliminated having to stress about my diabetes. The Dexcom CGM is a huge step forward. It has a small sensor I insert just below my stomach. It gives me readings every five minutes, 24 hours a day. Having a CGM is like having a best friend who always looks out for you.
DSM: How do you avoid the CGM’s alarm going off while performing?
NJ: I take all necessary precautions, including having juice on stage, and my band’s aware of my diabetes.
DSM: What would you tell young people who might feel self-conscious about wearing a device that could prevent them from wearing certain clothing, etc.?
NJ: A pump or a CGM might intrude on your life, on the clothes you want to wear, but you can always get creative and find a way to go about wearing it that’s comfortable for your lifestyle. Knowing where you’re headed as far as your numbers go is way better than any fashion statement.
DSM: What is your advice to loved ones who want to support a family member with diabetes?
NJ: The best way to support your loved one is to ask them how they would like you to support them. They may want space, or they may want you to be very involved. It’s incredibly personal.
DSM: And your message to kids who have just been diagnosed?
NJ: Stay strong and know that it’s all going to be OK and that you will be able to do all of the things you want to do in life. Know you’re not alone.