Support on the Diabetes Journey
Diagnosed with diabetes at age 15, Brandy Barnes went on to a successful career as a pharmaceuticals salesperson, but she deeply missed having other diabetic women in her life to whom she could relate. Finally, after a difficult pregnancy, long thought, and prayer, she founded DiabetesSisters (www.diabetes.sisters.org), a North Carolina-based nonprofit organization that provides education and support to women of all ages with all types of diabetes. DS offers conferences, websites, blogs, and a “sister match” program, all designed to lessen feelings of isolation and deepen bonds of connection among women with diabetes.
Diabetes Health publisher and editor-in-chief Nadia Al-Samarrie recently spoke with Brandy about her inspiration for launching DiabetesSisters.
Nadia: You started DiabetesSisters as a social networking site. Did you plan to manage it from home?
Brandy: Well, I actually started it when I had a full-time job. I was working at sanofi-aventis at the time, as a pharmaceutical sales rep. So when I started it, it was going to be a side project. First, I just wanted to see if women would be interested in visiting the site and talking to one another. I also wanted to know if it was just me who saw a need for this or if there were other women who felt like me.
Nadia: Did you think that your site would be a place where people could come and meet, or did you visualize yourself as a hostess who would introduce them to one another and help them connect?
Brandy: I was thinking that I wouldn’t necessarily connect them, but that they would be able to connect with each other. When I was pregnant, I felt very lonely and isolated. I looked everywhere I could, on the Internet, in my community, and even at my doctors’ offices for a resource that would help me connect with other pregnant women who had diabetes. I kept asking, “Can’t I just talk to another woman who has been through a successful pregnancy with diabetes?” I realized that there had to be a place where women like me could come and share experiences.
Nadia: What was your process in arriving at the name and concept?
Brandy: What happened was that about a year and a half after my daughter was born in 2005, I started to feel this sort of internal pull. I was really trying to figure out what I really should be doing with all of the skills and gifts that God had given me. Was I doing the right thing with them? Was pharmaceutical sales the place where I was really supposed to be using them?
I started to feel that God wanted me to do something that was bigger and better. But I just didn’t know what it was. I did a lot of praying. I filled out a lot of strength-finder questionnaires to identify my strengths and how I could put them all together to benefit the most people. Then one day, driving down the Interstate, this whole concept came to me. I actually pulled off the road, got out my little legal note tablet, and just started writing it all down.
After I had written for about 20 minutes, I just sat back and took a deep breath, thinking, “Okay, how in the world would I possibly do all this?” I’d written down things like “Women’s Forum?” “Buddy Match Program?” and “Annual Retreat?” Those were things that we later did, but at that time they all seemed impossible. I thought, “How in the world am I, Brandy Barnes, going to do all this stuff? How will we be able to make it so that women throughout the United States can find us, know us, and be a part of this?”
Nadia: Did you act on your ideas right away?
Brandy: No. At first it was a bit overwhelming, so I took that notebook home and crammed it in the back of my drawer. I sort of hoped that the idea would just go away.
Nadia (laughs): You were hoping your calling would go away?
Brandy: Well, I was thinking maybe I could forget about it for a little bit just so I wouldn’t feel so overwhelmed by it. Instead, I found myself thinking about it every day. I’d get excited thinking, “Oh, gosh, we could have this retreat and all these women would come!” I could visualize it. And I could just feel my heart like beating really fast, like, “Oh, my God, this sounds so exciting!”
I kept trying to figure out ways to actually make it happen. But I had a full-time job, a two-year-old, and a husband, so there wasn’t a whole lot of extra time in my life. Still, about a month later, right around Thanksgiving, I pulled the notebook out and took it down to my husband. I asked him to just let me talk about this idea I’d been thinking about and see what he thought. Before I could even tell him the whole thing, he was saying, “This is what you need to be doing! This is so what you need to be doing!”
Nadia: What a wonderful response!
Brandy: Yes. I had been thinking he was going to say something like, “This is way too much stuff for you to do.” But he was very supportive and said that what I had in mind was right up my alley. I said I didn’t know how I’d find time to do it, and he simply said, “Look, I know you-you’ll figure it out.”
So I went to meet with my endocrinologist, John Buse. He had been like a career mentor to me, and I wanted to see what he thought about my idea. He not only thought it was a great idea, but he also encouraged me to be careful about how many people I discussed it with because he was afraid somebody might steal it! For him to say that told me that I had a good idea. By the way, John later became our very first board member.
That was in November 2007. After that, during December and January, I was very busy getting the website built and making sure it had the features I wanted it to have. We launched on January 31, 2008.
Nadia: Aside from pregnancy, what other unique challenges do women with diabetes face?
Brandy: Even though I was diagnosed very early, at age 15, I went through all of high school and part of college not knowing that hormones play a huge role in your blood sugar level. Once I knew that, I started to really pay attention to things like the day my period starts because I know that I’ll wake up that morning with low blood sugar. It’s just like clockwork: I’ll have low blood sugar that morning, and then sometime later that day my period will start. Until somebody brings it to your attention, you don’t ever really notice the effects hormones have on your blood sugar.
Nadia: Are there any patterns to blood sugar levels? Do some women experience low blood sugar before their period, while others experience high blood sugar or no fluctuation at all?
Brandy: Some women will typically have low blood sugar levels, while the pattern for others will be high blood sugar. It’s an individual thing. Women can have similar patterns, but almost never exactly the same. Each woman, once she becomes aware of the need to find her pattern, can find it fairly easily by tracking what happens around the start of her period.
Nadia: How do you handle the tension that sometimes exists between type 1s and type 2s?
Brandy: Well, we focus a lot on the similarities between type 1s and type 2s because there are so many things we have in common. As for the tensions, at the beginning of every conference we address that. I remember that at the very first conference we had, you could just feel the tension in the room because type 1s and type 2s don’t normally come together. Each group had been told for so long that its disease was different from the other group’s and that because they were different, neither group needed to know about the other.
But what we really know is that there are so many things we have in common: No matter what type of diabetes you have, you need to know what your blood sugars are and you need to know how exercise impacts them. Whether you have type 1 or type 2, you need to know the patterns related to your hormones, medications, and pregnancy-all those things are the same whether you have either type of diabetes. I wrote this whole list of things that I’d always read at the beginning of every conference to make people realize that we have a lot in common although we’d been told for so long that we didn’t.
One of the things we do to break down the big wall that’s been built is to ask a question in a survey that we pass out at the end of each conference. We ask people to rate, from 1 to 5, with 5 being “always true,” the truth of the statement, “Women with type 1 and type 2 can support each other in their diabetes journey.”
So far, 97 percent of the respondents have rated it 5, “always true.” We’ve had to address mutual support head-on from the beginning and let people know this is what DiabetesSisters is about. That percentage is very gratifying.
Nadia: Thanks, Brandy.