In only four years Brandy Barnes has created something unique in diabetes, yet one quickly thinks, “Why didn’t someone think of this before?”
Brandy is the founder of Diabetes Sisters (DS), a website solely devoted to supporting, educating, and advocating for, women with diabetes.
The website is only a first portal. Diabetes Sisters also makes possible face-to-face sharing opportunities, and as you’ll discover, support for women in countries where diabetes isn’t even talked about.
This is the 13th in my series of profiles on diabetes change leaders.
Q: Why did you choose to focus solely on women with diabetes?
Brandy Barnes: I was diagnosed in high school and throughout high school and college I kept looking for ‘that girlfriend with diabetes’ whom I could talk to about girl things, like what do you tell someone when you’re dating. The isolation really came crushing down on me with the birth of my daughter. I desperately wanted another women who’d been through pregnancy and could say, “No, you don’t have to worry about this or now that’s something to worry about.”
I looked on the internet, in my local community, I even asked my endocrinologist to connect me with another woman. I thought this is scary and other women must feel this way too so two years after my daughter was born I started thinking about a way to support and connect with other women with diabetes.
Q: You tell a great story about talking to God that led to the creation of Diabetes Sisters.
BB: For a few months I was praying about what I was meant to do here. I felt this internal pull like God was telling me, “I gave you all these skills and abilities and opportunities and what are you doing with them?”
At the time I was a pharmaceutical sales representative. I spent a lot of time on the road and I remember talking to myself in the car. “Please, God, just tell me what it is I’m supposed to be doing! If you tell me, I’ll do it. But I can’t do it if I don’t know what it is.”
A couple of days later driving down the road the whole idea came to me. I pulled off the Interstate and grabbed a pad and started writing down all these ideas like a weekly blog, women’s forum, shopping for women with diabetes, annual retreat. At this point I hadn’t even read a blog! The only thing I’d done on the internet was check email and visit web sites.
After I wrote everything down it was overwhelming. I thought this is way too much for me to even try to do. I had said, “If you tell me what to do I’ll do it” but I didn’t think it was going to be so huge. I stuck the pad in the back of a drawer but every day I found myself thinking how could I make this work?
I kept seeing in my mind all these women at a retreat talking and laughing, it got me so excited I knew I needed to figure out how I was going to do this. A few weeks later I took the notepad to my husband Chris and before I could finish explaining he cried, “Oh, my God, this is what you should be doing!”
Q: I’ve seen Chris at that retreat that leapt from your mind to reality, ‘Weekend for Women,’ and it’s obvious how proud he is of you
BB: He has been my biggest supporter from the very beginning. He even came up with the name “Diabetes Sisters.”
Q: Is support the key to Diabetes Sisters?
BB: I think you have to address support before you get to the other pieces we provide, education and advocacy. Being connected to others takes you to a place where you care what your blood sugars are and will do the work. Being around other women who are doing well with their diabetes you think, ah, I want to do that. You also have to feel good about yourself before you want to, or can, take care of yourself. When you feel like you’re in this disease all by yourself you don’t have much motivation to put up with everything you have to do.
Q: What’s interesting is you began online but now have taken that support into the community in women’s living rooms
BB: Yes, in 2010 we had just finished our ‘Weekend for Women’ annual conference and a number of women wanted to take something like it back to their home town. That grew into our PODS Meetups. The name came from our first group of women who piloted the program in Raleigh, NC. PODS stands for Part of Diabetes Sisters. The idea is to transcend the tired old hospital support group and move into a new arena that truly focuses on meeting women with diabetes where women gather–in someone’s living room or a local restaurant.
Women meet once a month and let it all hang out. The first few meetings, or even the first year, it’s just a coming together to share and talk and get to know each other. Then Diabetes Sisters provides topics for the second year that the group can talk about.
Q: Are there specific topics women tend to want to talk about?
BB: Women really want to talk about relationships, about dealing with your significant other and extended family. Women want to talk about how and when do you tell a new boyfriend you have diabetes? Then there’s how do you handle people who want to be in your ‘diabetes-business’ like how do you correct family members who say, “You know if you’d just lose weight you wouldn’t have diabetes!”
A big thing that comes up at ‘Weekend for Women’ is sex. There’s little attention paid to sex for women with diabetes and really nowhere for women to talk about sexual issues so we always have a session on that at the conference. And questions about sex cross all lines. Diabetes Sisters includes women with any type of diabetes, type 1, 2, 1.5, gestational, ages twenty to eighty, and different ethnic backgrounds, and everyone has questions about sex!
Another message women need to hear from us and from each other is to put themselves first. Women want to take care of everyone else and if they have time they’ll get around to taking care of their diabetes. But you have to put yourself first so that you’ll be around to take care of your family.
Q: What do you get the most pleasure and satisfaction out of doing related to DS?
BB: Getting up every day and working on something that directly helps other women. I get chills when I think there are millions of women everywhere who need this.
I get emails from women all over the world and some of the saddest ones are from women in India. We get a lot from women there because it’s taboo to have diabetes, nobody will marry you. Women write, “I have diabetes and I haven’t told my future husband and his family doesn’t know because I know when they find out they won’t have anything to do with me. Should I tell them now or wait?” It’s so sad but at least they can go online to our web site and talk to other women in a forum, and get support and learn, because they can’t talk about their diabetes where they are.
Q: Diabetes Sisters is a nonprofit organization. Are you looking for more sponsors?
BB: Of course, always. We need sponsors for our ‘Weekend for Women’ Conference and our PODS Meetup programs. Anyone who’s interested can contact me on our web page or send me an email at firstname.lastname@example.org or call our office, 919-361-2012.
Q: What’s next for Diabetes Sisters?
BB: We’re expanding our PODS Meetups to as many states and countries as possible. We’ll continue to hold our annual ‘Weekend for Women’ conference and we’ve just launched our Sister Matchprogram.
Sister Match is an online social game that helps women find other women they have the most in common with. It could be they match via their location, sharing a hobby or a similar challenge. Through playing the game, women share their stories, opinions, meet various challenges, gain mentorship, knowledge and friendship, and end up weaving an online tapestry together.
Q: Before you were diagnosed did you have a life plan?
BB: I was going to be the next Barbara Walters or the next Oprah Winfrey, and I was dead serious about that. I really enjoy meeting different people and hearing people’s stories and bringing out people’s strengths. So maybe I’m shooting for the Oprah of diabetes.