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The Importance of Role Models
A diagnosis of Type 2 diabetes was a wake-up call for Susan Ito. In her words, this working mom was “an overweight, rice-loving, couch potato” who loved food but hated her body. Determined to become a better role model for her daughters than she had been up to that point, Ito joined Weight Watchers, started running, and has so far lost 33 pounds. While the long-term effect on her daughters remains to be seen, Ito has been able to serve as a positive example to others at Weight Watchers who also have diabetes. She says, “Many of our Weight Watchers members are pretty freaked out when they walk in the door after a diagnosis. But when they hear that I also have diabetes, it’s really encouraging for them, and we have a special bond.”
What is a role model?
How can role models help?
“When I first met my husband, he wasn’t private about his diabetes at all, whereas I had always kept it very private (testing in the bathroom, not telling others). His confidence really inspired me to become more outspoken, and that’s when I first learned how much of an influence role models can play in the lives of others. It’s very easy to feel isolated with this disease, and knowing that others can do this, and do it well, really parts the clouds for many.”
Crumpler and her husband now act as role models for their patients, and they’ve seen them do better as a result. “Doug and I always make sure to share with patients our current A1Cs and the issues we face personally with food and sugars, and we acknowledge that sometimes this sucks, but that we go through the same plight daily and are here if they need us. We’ve allowed new diabetics to inject us with saline, we demonstrate insertion of pump sites on ourselves, and we will often test our glucose levels in front of anyone!”
According to Crumpler, the payoff for this type of education and support is that “Patients come in with lowered A1Cs, they are more compliant, they are acting as their own diabetes advocates, they are active in our support groups and classes, and we have fewer phone calls and issues between visits. There has also been a huge decline in hospital visits.”
Diabetes role models
Former Miss America and diabetes advocate Nicole Johnson is another role model for women with diabetes who says it’s a privilege and responsibility to be a role model for others. “I’m thrilled when young men and women share their feelings about the public way I’ve lived my life with diabetes. It’s incredibly touching and inspiring to me personally. I was thrust into the spotlight in 1999, and I have been so honored to continue to travel and speak out about diabetes care and the power of optimism. When I speak, it’s wonderful to watch the faces. I feed off the audiences. The intimacy that we all have by a shared life with disease is remarkable. I often think we don’t acknowledge that bond enough, and we sometimes take it for granted. How special to be surrounded by people that understand you! That is part of the emotion for me as I speak and share, because I get to look out at a diabetes family.”
Reading books by public figures such as Mary Tyler Moore or Nicole Johnson or hearing them speak can help people transition from the “why me?” stage of having diabetes to the acceptance stage, in part by helping them see that they’re not the only ones facing the challenges of living with diabetes. But while it’s important to have celebrities to show that people with diabetes can reach for the stars, you don’t need to be famous to be a role model. Often, the most inspiring people are not.
Brandy Barnes, founder of the nonprofit support organization Diabetes Sisters, says, “It’s really important to look to the ‘everyday women’ with diabetes around us for inspiration.” Barnes organizes an annual Diabetes Sisters conference in Raleigh, North Carolina, and says that each year, when it comes time to identify female celebrities with diabetes to honor or invite to speak at the conference, it’s a challenge. “I hear stuff about [rock star] Bret Michaels, [football player] Jay Cutler, [basketball player] Adam Morrison, [Olympic snowboarder] Sean Busby, and [swimmer] Gary Hall, Jr., on the news regularly, but I don’t hear about female athletes with diabetes or even female celebrities with diabetes.”
One of those “everyday women” who might be considered a role model is Emily Stunek, who herself was influenced by a role model with diabetes when she was younger. Currently a college student in Minnesota, Stunek was diagnosed with Type 1 diabetes when she was seven years old. “Quinn (Nystrom) and I come from the same hometown, and when I was in middle school, she came and spoke to people with diabetes at our school. She talked about how she deals with it on a day-to-day basis, and what we can do to be advocates. Ever since then, we’ve become good friends.” That relationship made it easier for Stunek to go away to college, and Nystrom’s visit additionally inspired Stunek to become an advocate herself. Since then, she’s participated in the American Diabetes Association’s Walk to Stop Diabetes almost every year.
“More recently, I’ve become involved with advocacy as a Team Red Captain for the American Diabetes Association. Last year I was honored to go to Washington, DC, as a part of the ADA’s Call to Congress event to speak with legislators regarding diabetes funding, research, and support. Being a part of this community has really helped me accept having diabetes. I am not alone in this fight. And as an advocate, I want to encourage every person with diabetes to do the same.”
Where to find a role model
Big Blue Test. Weight Watchers leader Susan Ito says one of the most meaningful things she’s done since her diagnosis was to participate in the Big Blue Test video, which showed people with diabetes being active in different ways. This award-winning video was created by the nonprofit Diabetes Hands Foundation and takes place every November leading up to Diabetes Awareness Day on November 14. The campaign reinforces the importance of exercise in managing diabetes. People with diabetes are encouraged to do the Big Blue Test between November 1 and November 14 by checking their blood glucose level, getting active, checking it again, and sharing the results online at www.bigbluetest.org.
Ito says, “Participating in the video was very meaningful because I was shocked at the difference in my blood glucose after just 14 minutes of exercise. I loved the process and the message, and I can only hope it made a difference to other people with diabetes.”
A new Big Blue Test video is made every year, and founder Manny Hernandez says this year they are taking a different approach. “This year we are telling stories from some of the people who were featured the past couple years. Also we will feature Dr. Natalie Strand [a medical doctor with Type 1 diabetes who competed in and won the reality TV show Amazing Race 17], Sean Busby [Olympic snowboarder who has founded the ski and snowboard camp Riding on Insulin for kids with diabetes], and several other people from the diabetes community (advocates as well as medical professionals).”
Diabetes camps. Diabetes camps have been around for a long time and have provided many young people with diabetes with a transformative experience. Quinn Nystrom, founder of Dateline Diabetes, a nonprofit that provides support and mentors for young people with diabetes, says Camp Needlepoint in Wisconsin changed her life forever. “To me it wasn’t about learning to live life with diabetes, but how to live life despite having diabetes. My fellow campers were the ones who taught me these critical life lessons. For once in my young life I didn’t feel so alone. I felt normal. The first year I went (at age 13) I met a girl named Nicole. She had had diabetes since she was little, and I had had it only for five months. She showed me courage, strength, and faith that we could overcome any obstacle put in our way.”
To locate a diabetes camp for a child, go to the Web site of the Diabetes Education and Camping Association, www.diabetescamps.org.
Photographs. Ken Kotch, a photographer with Type 1 diabetes, was tired of hearing about all the things people with diabetes couldn’t do, so he set out with his camera to take pictures of all the things people with diabetes can do. His Web site, http://brokenpancreas.org, and book in progress, Broken Pancreas, highlight the faces and stories of people living and thriving (and riding motorcycles, making art, healing others, and drag racing, among other activities) with diabetes. Kotch’s goal is to get the book to people who are newly diagnosed with diabetes to offer pictures of all the things they can do with diabetes.
Books. The memoir Not Dead Yet, by Phil Southerland, is as much about his life with diabetes as it is about his development as a professional cyclist and founder of Team Type 1, the world’s first professional cycling team to include athletes with diabetes. Southerland’s life mission is to empower people with diabetes.
Another memoir of living with diabetes, this one with recipes, is The Sweet Life: Diabetes Without Boundaries, by Sam Talbot, recent runner-up on cable TV network Bravo’s Top Chef. Diagnosed with Type 1 diabetes when he was 12, Talbot is now a professional chef who develops diabetes-friendly recipes.
Videos. The Web site http://youcandothisproject.com, which was created by Kim Vlasnik, hosts a series of homemade videos of people sharing their stories about the realities of living with diabetes. Watching the videos of everyday role models is a great reminder that you can do this!
Web sites. The mission of the nonprofit organization Insulindependence (www.insulindependence.org) is to inspire people with diabetes to set personal fitness goals, educate them on management strategies, and equip them to explore their individual capacities. Local chapters organize group activities such as hiking, running, surfing, cycling, and yoga, and there are also regional activities that may take place over a weekend.
“We believe that by sharing experiences with other people with diabetes, we can expand our knowledge base in more and better ways than can be learned in any medical office. We can save each other a lot of trial and error by sharing what has and has not worked in our own diabetes management,” says Blair Ryan, media and public relations director.
Ryan, who has Type 1 diabetes herself, has traveled as a photojournalist on expeditions and says she has seen participants change over the duration of the program. “I witnessed the true meaning of Insulindependence’s founder and president Peter Nerothin’s experiential diabetes education and understood the importance of sharing experiences for the benefit of the entire diabetes community.”
A competitive runner who, thanks to the encouragement of her family, didn’t let diabetes slow her down, Ryan adds, “It’s an unfortunate truth that newly diagnosed patients are often told they must discontinue activities they have done their whole lives. It’s widely known that exercise is a crucial component of diabetes management, and we recognize how important it is that people with diabetes are shown by example that there is nothing they can’t do.”
Diabetes Sisters. The idea for the nonprofit Diabetes Sisters (www.diabetessisters.org) began when Brandy Barnes was pregnant with her daughter. Overwhelmed by the hard work required to manage a healthy pregnancy with Type 1 diabetes, Barnes wished there was someone who could relate to what she was going through. Eight years later, her dream became a reality, and the women’s support organization she founded now offers an annual conference, cross-country support groups, expert online advice, forums, sisterTalk blogs, and a SisterMatch Program. “Everyone should think of him/herself as a role model. You never know who might be inspired by you,” Barnes says.
Showing the way
How do you find these people? Start by looking around. Check out the resources mentioned in this article, look for support groups in your area, or use the many opportunities to participate in online discussions about diabetes. Be proactive about learning about diabetes, talking about it, and meeting others who have it; pretty soon, you may realize that you’ve become a diabetes role model yourself.
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