Diabetic Connect's Voices of Diabetes series gives members of the diabetes community the opportunity to share their personal challenges, insights, and life experiences with a larger audience. We hope these stories inspire and encourage you to find your own voice as a diabetes advocate. If you would like to share your story, contact us at firstname.lastname@example.org. Visit the Voices of Diabetes page on Diabetic Connect for more in the series.
Amy Tenderich was diagnosed with type 1 diabetes in May of 2003. She is the founder and editor-in-chief of Diabetes Mine and co-authored the book Know Your Numbers, Outlive Your Diabetes. You will frequently find her speaking at diabetes, health, and social media events across the country.
Nick Jonas. Just whisper his name and you can hear girls screaming across the country, no? Nick, who was diagnosed with type 1 diabetes in October 2005, has chosen to devote much of his fame to raising awareness about diabetes. Thanks to the good folks at DiabeticConnect.com and Bayer Diabetes, I was delighted to have the opportunity to “dish on diabetes” with Nick over the phone last week. (My three daughters will never, ever look at me the same again!)
Q. Most people don’t want to be defined by their illness, but you’ve been so public with yours. Was that something your family or publicists pushed, or did it come entirely from you?
From day one, it was my call. I wanted to first be comfortable with it — and then once I felt I was in a good place with my diabetes, I was ready to go out there and share it.
It’s one of the better decisions I’ve ever made; it’s given me a lot of joy, and hopefully brought comfort to a lot of people.
Q. How can you tell that you’ve made a difference for all these kids out there with type 1? Can you give us some examples?
A lot of people come to me and say, ‘I was alone, and then I saw you also living diabetes and I didn’t feel so alone anymore.’ That’s a great thing!
When I hear that, I tell them, ‘Keep your head up. It’s tough in the beginning. It can be overwhelming, but it’s going to be all right. You can do anything you want with diabetes.’
Q. What about at your concerts? Any special connections going on there?
Several times people will pull up their shirts to show their pumps on their bellies. In the beginning I was like, whoa! When they first start lifting up their shirts, you really don’t know what’s coming…
And when the really little ones come up and show their pumps, that’s so cute. The pump looks like it weighs a bit more than they do.
Q. Are you still a pumper? And do you also use a continuous glucose monitor (CGM) system?
Still a pumper, yes. I have tried CGM, and I want to get back on it again. When I did, it was one of the first-generation devices, which was good, but a bit more difficult to use than I would have preferred.
I have seen the new ones, and they look really powerful and useful — so I’m hoping to get on one of those soon.
Q. When I interviewed you last time, you talked about how diabetes somehow brought your family even closer together. Has all the craziness of fame and fortune made things harder?
I don’t think it has. It has made us all very aware.
When the schedule gets crazy, we don’t lose sight of making sure my blood sugar is on track. It becomes even more important — everyone’s on top of it, knowing what they need to do if a situation should arise.
Q. Sounds like it’s a team effort. Do other people get involved in your diabetes regimen, or do you like to handle everything yourself?
It is a bit of a team effort. Diabetes effects the individual who’s diagnosed, but also family and friends who are around the person. It pushes them to learn and be aware. I’m lucky to have great people around me to help me every day.
Q. Does that mean a doctor or diabetes educator who tours with you?
No. I’m kind of a diabetes educator myself. Obviously I know a lot about it. Also, a lot of our team has gone to diabetes education classes and learned what to do for situations that may become difficult.
Q. So how has your BG control been in the last few years, with all the traveling and physical exertion on stage?
It’s mostly been smooth sailing. Of course I have an occasional low here and there. I always keep apple juice on the side of the stage, always ready to go just in case. If I need it, I just give them the signal — a look and I point down — and they know what to do. My guitar tech walks out and gives me a quick apple juice.
Overall, I’ve been blessed to have good diabetes control these last few years.
Q. I know you test before and after performances, but also during?
On our last few tours I never really left the stage once we started the show, so I’ve not done a mid-show test, no. But I am pretty good at telling where I am — if I’m high or low.
Q. Shifting to the “Big Picture,” what would you say is missing right now for people whose lives are dependent on insulin? In other words, if you could change one thing for people with type 1 diabetes, what would it be?
Every diabetic hopes for cure one day — but we’re still a long way from that.
If I could change one thing, I’d wish for a way for type 1’s to receive insulin that’s not from a pump or shots — a simpler way that doesn’t involve needles and things.
It’s OK for me, but for the younger diabetics in particular it’s a difficult thing to deal with. That’s what I hear from most of the kids — they don’t like shots or having to put a pump on. If there were way to simplify that, it would be amazing.
Other than that, we all just have to be patient, and wait for new technology and new discoveries in diabetes. I hope that one day we can live totally normal lives. We can pretty normal lives right now, but it’s still a challenge.
*Nick is the spokesperson for Bayer’s Simple Wins campaign, which among other things offers diabetes Dog Tag IDs for $5 each, with the goal of selling 50,000 tags (40,000 sold so far!). 50% of the proceeds go to the Jonas Brothers Change for the Children Foundation which supports diabetes and other causes.
See also: a new “United for Diabetes” report that was just released with support from Nick Jonas + Paul and Mira Sorvino, along with the ADA, IDF, and AADE. The report will be distributed to over 1.5 million readers, aiming “to educate and inspire those suffering from diabetes to take control of their disease.”*