Singer, songwriter, actor Nick Jonas, 23, was diagnosed with type 1 diabetes 10 years ago. As a fellow type 1 myself, and a regular blogger for OnTrack Diabetes, I was thrilled when I got the call about the chance to interview Jonas! He's been my dia-crush (person with diabetes who has a crush on another diabetic) ever since I heard him croon with his brothers. Even cooler in my mind (other then his global superstar status) is that he's down-to-earth and actually cares about raising diabetes awareness. So how does he hope his non-profit, Beyond Type 1, will help people with diabetes? What does he look for in a 'type 3'? What's the nicest thing someone has done for him to support his diabetes? Read my exclusive interview with this bright star (and dia-badass!) to find out.
Tell me about your type 1 diabetes diagnosis.
Ten years ago when I was 13 and touring with my brothers, I noticed a dramatic change in my body and my mood. I’ve always been a very upbeat person, but suddenly, I was irritable all the time. I was constantly thirsty and always needing to use the bathroom. I also started losing weight rapidly—20 pounds in two weeks! Something was very wrong. I felt sluggish, drained, like a balloon losing air. I was struggling to get through my tour and finally decided to make an appointment to meet with my doctor. She ordered several tests, including my blood glucose. My level had spiraled out of control to over 800—I was immediately rushed to the hospital. It was absolutely terrifying. The doctors told me I had type 1 diabetes.
How did you initially handle the news?
It was truly one of the most frightening moments of my life. I was shocked at first. And my family was just as panicked. But the real scare was I had to quickly learn so much. It was completely overwhelming. Looking back on it now, I guess in some ways it was better to be just thrown in and given everything at once. Knowing that everything was possible to live your life while you have this disease—it was a real shock and also a bit of a relief. I knew that something was wrong physically and it was a relief to be able to put our finger on what it was.
How long have you been wearing the Dexcom Continuous Glucose Monitor (CGM), and have you seen a difference since making the switch?
I’ve been on the Dexcom for two years now after being introduced to it by a good friend Sam. He was wearing it and told me how great it was for him, so then I jumped right on it and soon realized how simple my life became. With my schedule, getting my blood sugar sent to me every five minutes made it a real ease.
Have you seen a difference in your quality of life by making the switch to Dexcom? If so, what?
I’ve seen a major difference and just recently had a check-up with my doctor and my numbers were excellent. Actually, they were my best since having type 1 diabetes. That was really encouraging.
Do you do insulin injections or do you wear an insulin pump?
I’m on a pump.
What advice would you give to someone hesitant to wear a CGM and/or pump because they’re afraid of having a physical medical device on them that people around them can recognize?
I’ve had a lot of conversations with friends and people that come up to me and share their stories at my shows and want some advice on this. Best advice I can give is looking at diabetes in my experiences has always been about how simple I can make my life and how focused I am on not letting it rule my life. That sums up my mentality. There can be fear at times to break from what they’re used to and do something that steps outside of their comfort zone. I always say that I think you’ll immediately see a difference in your numbers and knowing that you will feel better. The appearance side is more overwhelming thought than a reality. There’s always a way to go about being discreet, especially for women. Know that you can be creative and find a way to handle it so that you’re not uncomfortable.
How do you hope your new non-profit Beyond Type 1 will help educate people?
I think the main goal for Beyond Type 1 is about raising awareness around the differences between type 1 and type 2 and to specifically build the community for type 1 diabetics. To build up comfort and a safety net for people. When I have hard days, I reach out to my type 1 friends because we speak the same language. Our website was designed to show diabetics living their lives out the way they want to live them because there’s a real encouragement to that on a day-to-day level. And yeah there’s speaking out when people talk with ignorance and aren’t completely aware of the impact of what they’re saying on so many people’s lives. Eventually we need to do all that we can to raise money for a cure.
One of our readers, a mom of a little boy with type 1, wants to know: “How does Nick carry his supplies and does he feel free to test everywhere or does he prefer to test in private?”
I carry my supplies in my backpack that I take everywhere I go. If I’m on the road and I’m walking into dinner or an event I’ll leave it in the car, knowing that it’s near by. My whole secutiy team and my assistant carry supplies as backups. The CGM makes testing in public easier because I can just look at that and if I need to test with a meter I’m not really shy to pull it out and do it in public because there’s been freedom speaking about living with diabetes and sometimes it’s a conversation starter (chuckled) in a weird way. I’m not really uncomfortable about it…I let the flag fly.
I think that’s great. You and I are probably very similar in that (letting the diabetes flag fly)! We both know as T1’s you don’t get to take a day off from having diabetes. What secrets have you found that help you better manage diabetes?
I think the biggest piece has been really trusting my doctor. I have a great doctor and I rely on her in a big way. Outside of that, I think being transparent with your friends and family is important. Some of the pressure that I feel at times is about keeping face even when I’m feeling high blood sugar or low. It’s ok to be in that moment and make everyone aware, especially if they feel like something is off about you. There’s nothing worse than having to hide a low or high blood sugar. (When you tell others what’s going on) It gives you time to manage it. I also think it's just being aware of your body. Knowing that everyone’s life with diabetes is their own life with diabetes and it’s very individual to them. The way their body will react can be different. Try to be aware, take mental notes of how your body reacted in different situations and if a complication happens, do everything you can to go about it in a different way and just learn from the experience. Don’t get down on yourself.
When it comes to dating, I’m sure you’ve made a couple headlines for who you’ve been out with. How would you define a good type 3 (a diabetic significant other)? Are there some specific traits that you look for and/or stay away from?
(Jonas chuckles). Definitely found more to stay away from at this point! I think it’s about learning from each experience. What I look for is someone who can be a support system for your diabetes; someone who is willing to learn as much as possible. Willing to be helpful with situations where they need to be helpful but then also give you space when you need space. When I’m taking care of a low I prefer to be on my own and not really be talked to that much. I just want to get it up and figure it out. I need someone to understand that. There’s that real desire to want to support the person who is not feeling well—but sometimes the best thing to do is just to give them that space. Someone who can understand that is really great. I want someone who wants to get involved in the foundation and other diabetes related organizations…that means the world to me.
What is the kindest thing that someone has ever done to support you when it came to your diabetes?
My brother Joe and I live out in California together and spend a lot of time together. He’s very aware of when I’m feeling off with diabetes. He’s really learned to manage different scenarios, which has been great. I try to be a pretty controlling person but there are times, like you said, you don’t get a day off from diabetes and so there are days when you just have to handle having diabetes, and over the years of touring with the band, he would handle it for me. He’ll tell the team, “We need this and that.” I think that kind of brother love—there’s an understanding that goes unspoken and is a really incredible thing.
What is the biggest positive and negative to living with diabetes?
I think the biggest positive for me is that it’s my story to encourage people, to give them that faith that I so desperately wanted when I was first diagnosed. Hopefully they can look at my story and me and see that it’s possible to do whatever you want to do with your life; to be free, while living with the disease. I think the negative is just that we still have such a long way to go until people are really educated and you stop getting asked the questions that are the eye-rolling questions. The eating sugar questions. What did you do to get diabetes? Those questions are hard…I’m not going to lie. It’s annoying and hard and I know that a lot of diabetic friends of mine feel the same way. But we are getting there. It’s just a process before people really start to understand. I think we just have to be patient. If that’s the worst thing about it then we’re in good shape. I think the road ahead is exciting. We also have technology pushing us forward. Hopefully we’re in a place in a couple years where it’s even better living with diabetes.
We’re incredibly appreciative of the work that you’re doing to put a face on the disease and to be such an outspoken, positive advocate. I know it's a choice of yours where you put your resources. Thank you for that.
Thank you, I really appreciate that.
Let’s join Nick in continuing to raise the diabetes flag high so that we’re that much closer to a cure while raising public awareness for people living with diabetes.