I interviewed Brandy Barnes in late 2011 (“Support on the Diabetes Journey,” article 7400 on the Diabetes Health website) about the inspiration for her 2008 launch of DiabetesSisters (www.diabetessisters.org). The rapidly growing organization of women with diabetes has struck a chord with its optimistic message of sisterhood and loving mutual support. As Brandy prepares for two major conferences this year, I got her to hold still long enough to give us an update.
Nadia: Your recently redesigned your website at www.diabetesisters.org: What’s different and why did you change it?
Brandy: We surveyed our members to find out what they liked and didn’t like about the site. We found that our previous platform didn’t allow for the easy navigation our DiabetesSisters wanted, and that they wanted to interact with one another more. So we did a major overhaul with a sleek new look and feel.
The new platform allows members to find the information they want much more easily, including events, forums, and blogs. We’ve also included social networking buttons so they can “like” what they are reading.
Nadia: What is the DiabetesSisters vision?
Brandy: Our mission has remained the same since the day we started and always will: We’re about bringing women together, whether online or in a central location, such as our conferences, or PODS (Part of DiabetesSisters) meet-ups, where women can support, educate, and empower one another. The three branches of our mission are support, education, and advocacy.
Nadia: I love your vision statement where you say “engage, unite, empower.”
Brandy: Engagement is very important for women with diabetes. They have to be engaged to be able to make the significant changes that will impact their health. But before she can feel the desire to make those changes, a woman has to 1.) feel good about herself and 2.) become engaged in her own healthcare and not be a passive participant.
We try to accomplish this through our PODS meet-ups and annual conferences. We address different mental and physical health issues that affect women with diabetes, which many of them have never before heard discussed or even acknowledged.. When they realize they’re not alone with these issues, they feel united with the other women in the room. Suddenly they’re surrounded by many, many women who “get them.” That is very empowering.
Unity is a critical component of our mission and vision. I’m all about bringing women together, and always have been. I don’t want women with diabetes separated into different, smaller groups, with type 1s over here, and type 2s over there, and gestational diabetes beyond, doing their own thing.
Yes, there are things that make each type of diabetes unique, but the one thing, the big thing, that brings us all together is the diagnosis of “diabetes.” We don’t focus on what makes each type of diabetes different, we focus on what all of us women with diabetes have to deal with on a daily basis. The list of similarities among types of diabetes is much longer than the list of their differences.
Nadia: How does coming together work as a springboard for women deciding to take better care of themselves?
Brandy: There’s more and more research that demonstrates the value and power of peer support among people with diabetes. The first 15 years after my diagnosis, what I wanted most was to find that ever-elusive “girlfriend” with diabetes with whom I could share my diabetes triumphs and failures. But, there was just no easy way to do this, other than searching the world over on my own.
Having the support of a peer who understands motivates and gives people the courage to make important health changes. Yes, it’s great to have doctors, but people with diabetes spend over 8,000 hours every year managing the disease on their own. That’s a lot of time to be by yourself, going it alone. When you have the opportunity to come together, it’s a culmination of the desire to be supported and understood-all these great minds are gathered together and there’s a lot of knowledge to tap into when people start sharing. A whole new world opens up.
Nadia: You have a SisterMatch Program online. Is this different from the PODS meet-ups?
Brandy: Yes, it’s solely an online program where women answer questions about themselves, take diabetes quizzes, and complete diabetes challenges. Based on the answers they give about themselves, an algorithm matches them with women who give similar answers. This makes it easy for a woman to find commonalities with other women and start conversations with them. Those are usually the hardest parts of beginning new friendships, so we take the hard parts out.
Nadia: How do people get involved with DiabetesSisters?
Brandy: There are several different ways. They can register on the website. It’s free and allows them to stay up to date with the organization, comment on sisterTALK blog posts, and interact on our Women’s Forum. You don’t have to be registered to come on and read the educational articles written by our own team of experts. We have psychologists, attorneys, CDE’s, and nutritionists writing for us, many of whom have diabetes.
They can also by look for a PODS meet-up in their area. If there aren’t any, they can start one, which we will gladly help them get up and going. We have about 25 PODS monthly meet-ups throughout the country right now and that number is increasing every month. Our goal is to have meet-ups in 40 of the 50 states by 2015.
Of course, the other way to get involved is to come to one of our conferences!
Nadia: Where do you look on your website for conference information?
Brandy: You can look on the main menu or click the box that says, “Weekend for Women Conference.” The May conference will be held in Raleigh, North Carolina, May 3-5. It starts Friday evening with a “meet and mingle” social event that’s a fun way for everyone to get to know one another and begin bonding. On Saturday, we’re going to do the orange:will Diabetes Awareness Walk*, which is our signature event to raise awareness about the unique challenges faced by women with diabetes.
After that we’ll have sessions from 10 a.m. to 5 p.m. featuring various experts and well-known diabetes advocates. This year’s advocates include powerful women like Riva Greenberg, Ginger Vieira, Amy Tenderich, and Kerry Sparling.
Our experts come from Duke and UNC to speak on different diabetes-related topics, with an emphasis on women’s challenges. We create our sessions based on feedback from the previous year’s conference attendees, as well as current diabetes management trends. We try to offer a variety of sessions that appeal to women who range from the recently diagnosed to those who have lived with diabetes for decades.
This year’s sessions will include topics like “Learning to Love Exercise,” “Diabetes Technology: Determining What You Need and How to Get It,” “Diabetes Supplements: Which Are a NO and Which Are a GO for Women With Diabetes?” We’ll also have some great roundtable sessions, such as “sisterTALK: How to Create Better Relationships and Marriages.” The full agenda is on our website.
This year, we’ve also built in more opportunities to socialize. After the day sessions, we’ll kick back that evening for an event called “Night on the Town.” There will be five different restaurants where attendees can dine with one of our conference speakers stationed at each one. The speaker won’t be there to give a talk but to answer questions and socialize. Attendees will have the opportunity to ask questions they didn’t get to or didn’t feel comfortable asking in front of the group.
Afterwards, we’ll come back to the hotel for a “Coffee & Dessert Social,” with a book signing and a special performance. Sunday, we’ll change the pace by exercising in the morning with Ginger Vieira, who will help women develop their own personal fitness plans. Later we’ll present our Sisterhood Superlative awards, and then offer two field trips. Attendees can choose to visit the local Novo Nordisk plant to see how insulin is made or visit an organic farm to learn how organic foods benefit them as women with diabetes.
Last year, we offered the “Partner’s Perspective Program” for the husbands, partners, and significant others of conference attendees. It was a huge success, so we’re offering it again this year. The program’s agenda not only keeps partners entertained while their loved ones are learning how to manage and cope with diabetes, it also educates them about the unique challenges of living as a woman with diabetes and provides insights on how to best support their partners.
Nadia: What does it cost to attend?
Brandy: We’re offering an Early Bird rate this year: If you register by February 15, the price is $125. After that, it increases to $150. Women can also register their partner or spouse to attend the Partner’s Perspective Program. We’ll also be in San Francisco, October 4-6. We’ll post information about that conference soon, but registration won’t be available until after the May conference.
Nadia: Brandy, thank you for having the vision and courage to empower and bring DiabetesSisters together.
(*The orange:will campaign was started by DiabetesSisters in 2010 to raise awareness of the unique issues faced by women with diabetes and to establish orange as the official color of women’s diabetes.)