Things you might expect to find at a JDRF support group: information, mentoring, type 1 diabetes (T1D) toolkits and connection with the broader T1D community.
Things you might be surprised to find at a JDRF support group: your future spouse.
JDRF prides itself on being a full-service organization for people with T1D and their loved ones, but Amanda and Tyler Montelione have taken that concept to a whole new level. The couple met at a JDRF support group meeting and eventually married in July 2013.
Amanda doesn’t have T1D, but attended the meeting with a friend who does. Tyler, now 32, was diagnosed with T1D when he was 17. “Meeting him in that setting was important to him because he didn’t have to date someone for a while and then break the news that he has T1D, which made people treat him differently,” says Amanda. “People become overly cautious when they don’t understand. They attach a stigma to it.”
Because of her friendship with a person with T1D, Amanda was familiar with the disease. Even so, she discovered that living with somebody with T1D can be challenging. “I had knowledge of T1D but I didn’t know how to live with someone who had it, so I had to be more direct and educate myself,” she says. “There’s a learning curve there and I’m learning more every day. I have to make food that’s good for him and give him time to go exercise even though we have a son who’s 18 months old and that’s not always easy.”
“As a spouse of someone with T1D, the best thing you can do is just be there. You don’t really need to be overly supportive because sometimes that’s annoying. If I hover, that’s annoying. Educate yourself, be there when they’re ready to talk, and help make good choices as far as meals and exercise are concerned.”
Amanda says that she and Tyler “are hoping for great things” when it comes to managing T1D in the near future. She is especially excited by recent advances in artificial pancreas research and credits JDRF and its supporters with playing a central role in moving T1D research forward. As new parents with a family history of T1D, she and Tyler are hoping for a cure and would tell JDRF supporters that researchers “can’t make any significant progress without them” and that recent breakthroughs make it easy to stay optimistic. “It’s important for spouses and people in general to see, yes, T1D is going to affect your life, but it’s not going to end your life,” says Amanda. “You might need to make a few changes here or there, but that becomes natural and you learn to embrace it.”