When a person is diagnosed with diabetes, they get directives from their endocrinologist and Certified Diabetes Educator (CDE) on how to manage their diabetes. But successfully managing diabetes goes way beyond insulin-to-carb ratios, basal rates and carb counting. Finding support from others who “get it” can help us on levels far beyond what a medical professional can offer. One organization that is helping women of all ages with all types of diabetes find support is DiabetesSisters. Brandy Barnes is the founder of DiabetesSisters and author of the book "A Woman’s Guide to Diabetes: A Path to Wellness", which she co-wrote with Natalie Strand. Check out my Q&A with Brandy below, as she shares more about DiabetesSisters and how women can find support.
Leighann: Why did you start DiabetesSisters and how has it grown?
Brandy: I started DiabetesSisters in January of 2008 after my own unsuccessful experiences in trying to find other women with diabetes to talk through problems and share life with. Throughout college and early adulthood, I dreamt of a friendship with another female who understood what life was like with diabetes. Unfortunately, I was not able to find it.
I would say that I felt the loneliest with my diabetes during my pregnancy with my daughter in 2004-2005. I asked my endocrinologist and high-risk obstetrician to connect me with another woman with diabetes who had been through or was currently going through a pregnancy, but they were not able to do so. I searched local resources and the Internet and came up empty-handed.
It was in 2007 when I felt a strong pull, or maybe a nudge, to do something about the lack of resources and community available to women with diabetes. I launched the organization’s website in January 2008 with just myself and one volunteer blogger. Since then, the organization has grown tremendously serving over 12,000 registered members through annual conferences being held (sometimes two conferences per year), 47 trained PODS (Part of DiabetesSisters) Meetup Leaders holding monthly support groups in over 32 cities throughout the U.S., and a website that serves over 240,000 women with diabetes and their families annually. In the last year, we have also introduced the very successful DiabetesSisters’ Life Class Webinar Series. We have many more new and exciting projects in the works for 2015, but I can’t tell you about them just yet!
Leighann: What type of support do you feel that women with diabetes need that they aren’t necessarily getting from their endocrinologist or CDE?
Brandy: Most people with diabetes agree that hearing a healthcare tip or suggestion coming from a person with diabetes sounds very different than one coming from a person not living with diabetes. There’s just a certain amount of validity that comes with living with the disease 24-hours-a-day, seven-days-a-week. And, while it’s wonderful to find anyone with diabetes – male or female – to talk with openly about your diabetes, there are still some areas of diabetes that men just can’t relate to. There’s just a certain comfort that comes from talking to, sharing with, and learning from another woman with diabetes – about how the hormones of puberty, pregnancy, menstruation and menopause affect her. The incidence of eating disorders, depression, body image issues, cardiovascular disease and osteoporosis are much higher in women with diabetes than their peers. These are also topics that women often find it easier to discuss with their peers who understand what they are going through. That doesn’t mean that men, endocrinologists or CDEs cannot provide value to women with diabetes. It merely means that the value they provide is different (and complementary) to that of other women with diabetes.
Leighann: How can women with type 1, type 2, LADA and gestational diabetes support one another even if they have different types of diabetes?
Brandy: For far too long, people with different types of diabetes have been segregated. Some have even been led to believe that they have a completely different kind of illness. At DiabetesSisters, we stand firm on our belief that more can be accomplished together than separately, and that each woman has the opportunity to learn from another woman with diabetes – no matter what age, type or length of time living with the disease. We all come to the table with our own tips and tricks, but in order to gain all that there is to be gained, you must come to the table with an open mind.
We typically start off our conferences by addressing this question head-on. It’s often the “elephant in the room,” but once we start pointing out all of the things that people with various types of diabetes have in common (e.g., they must be aware of carbohydrate intake, must check blood sugar levels, must understand how exercise affects blood sugar level, must know what to do when blood sugar is low and when it’s high, etc.) rather than focusing on how they are different, it becomes very clear to attendees that it’s not about what type of diabetes you have. It’s about having an open mind and being willing to learn from others who talk the talk and walk the walk on a daily basis.
I have seen MANY women with type 2 diabetes who were fearful of going on insulin gain a deeper level of understanding about the value of it and even tell their physician that they are ready to start it. Likewise, I have seen many women with type 1 diabetes walk away from discussions with women with type 2 diabetes with a much better understanding of insulin resistance as well as an empathy for the blame and shame that many women with type 2 diabetes face on a daily basis.
Leighann: There are several ways that diabetes has been represented as a cause including the grey ribbon with a red blood drop and the blue circle. What is the Orange:Will campaign and why have you chosen the color orange to represent women with diabetes?
Brandy: We actually chose orange back in 2008, because at that time there wasn’t a unifying color or any kind of active movement to create one among those with diabetes. Orange represents power and courage and it is also welcoming, which I felt was very fitting of our membership. I think it was around 2010 when the blue circle gained popularity among people with diabetes as a unifying symbol due to the International Diabetes Federation. As an organization, we also stand behind this symbol/color (blue circle) mainly because it has been such a unifying force and we strongly support anything that brings people with diabetes together for a positive reason. While we still celebrate orange as the color that represents DiabetesSisters and women with diabetes, and we encourage women to wear the color at our events, we also stand strongly behind the blue circle.
Leighann: How can women find more local support if they aren’t able to attend one of the weekend conferences?
Brandy: The PODS Meetup Program is now available in over 32 cities throughout the U.S. PODS stands for Part of DiabetesSisters and it’s our way of bringing women with diabetes together on a monthly basis in an organized fashion to discuss topics of specific interest to them. Each month has a theme and an educational module on this topic is provided to the PODS Leaders. Our monthly newsletter is also focused on the same monthly topic and we often have a Life Class Webinar on the same topic during the month.
PODS Meetups meet in a variety of locations, some in leaders’ homes, some in local coffee shops, some at the YMCA and some at the local library. The idea is to meet the women with diabetes in the community where they are and provide the information and support they have been craving, so that they can live happy, healthy lives with diabetes. Each Meetup typically lasts two hours and, while a portion of the meeting is devoted to the educational module, a portion is also dedicated to socializing and getting to know one another. Life is hard enough! Having the ongoing support of friends walking along side of you and supporting you in your diabetes journey can make a huge difference. NO ONE can do life alone – especially not with a chronic illness like diabetes.
Leighann: Besides the Weekend for Women conferences and PODS Meetups, does DiabetesSisters offer any online support or education?
Brandy: Absolutely! We have women with type 1 and type 2 diabetes blogging and sharing their experiences on our website at all times. We also have a woman who is going through pregnancy and diabetes blogging at all times. All of these blogs are archived, so a woman who is thinking about pregnancy could literally sit down in front of their computer and read through a multitude of women’s experiences with diabetes and pregnancy, and walk away with a solid knowledge base of what to expect during and after pregnancy.
We also have an excellent team of medical, behavioral and legal contributors who contribute monthly articles on our website. We also offer “Educational Briefs” videos on a variety of topics, from eating disorders to journaling. As I mentioned previously, we also offer Life Class Webinars which are announced in our monthly newsletter and available in the archives on our website.
To learn more about DiabetesSisters, Weekend for Women conferences and PODS Meetups, visit the DiabetesSisters website.