Chris Barnes in’t only the husband of a famous woman with diabetes, Brandy Barnes. He’s also the leader of the “Partners Perspective Program,” a new segment of the DiabetesSisters Conference Brandy founded several years ago.
His partnership with Brandy, spanning more than 20 years, has given him a graduate credential in how to live supportively with a spouse who has diabetes while also taking care of himself. Chris admits it takes time to build a trusting relationship when it comes to asking his wife about her blood glucose numbers. But over the years he and Brandy have found a formula that can help the partners of women with diabetes.
You can garner their insights at their next two conferences-the first in May in Raleigh, North Carolina, and the second in San Francisco in October.
Before then, I thought you’d enjoy reading what Chris has to say about life with Brandy.
Nadia: Chris, it’s wonderful that you’re involved in the DiabetesSisters’ Weekend for Women conferences. How did the partners’ segment get started?
Chris: At one of the conference exits in 2011, a woman suggested we include husbands and/or partners of women with diabetes. We pride ourselves at the conferences on taking feedback from attendees and trying to incorporate it into the next year’s conference. So when we debuted the Partners Perspective Program in 2012, we had a very good turn out.
Nadia: You have a lot of experience living with someone with diabetes. How did you decide what was important or interesting as you developed the curriculum?
Chris: A lot of it was from the feedback and experience Brandy and I had when we did the first conference for DiabetesSisters in 2010. There are a lot of women out there who had never met another woman with diabetes. We realized that if a woman who has diabetes has never met another woman with diabetes, then her husband or partner probably hasn’t met a counterpart who is living with someone with diabetes.
We kept it basic in the first year of the Partner’s Perspective Program. We discussed the signs of low and high blood sugar in their spouse or partner, and how to emotionally support her. We also discussed diabetes myths and how partners can take care of themselves. Partners had an opportunity to vent their emotions about living with a partner whose ailment never goes away. It was a safe environment for them to say whatever was on their minds.
Nadia: What were the most common things partners vented about?
Chris: One thing I’ve heard over the years is what people with diabetes sometimes call their friends and family members: the “Diabetes Police.” Basically, they feel their loved ones want to know what their blood sugar is each and every time they check it. So part of what we discussed was how can we glean that information from our partners without seeming as though we are trying to check up on them.
We talked about how to open up communication with partners in honest, non-accusatory ways. For example, “I care about you and I want you to be around for our family so we can both enjoy our grandchildren. I want us to be a team in managing your diabetes, not just you alone. Knowing your blood sugar readings is not going to create a judgment from me because I know that I couldn’t manage diabetes any better than you. I just want to be included and feel like we’re a team on this.”
I also introduced to the partners to something I’d learned over the years: Sometimes when your partner has a low blood sugar, she may see the number on the meter, but because her blood sugar’s so low her mental capacity is diminished. She may not really understand what to do next. What Brandy and I have done for a number of years is that whatever her blood sugar is in the middle of the night, she wakes me up and tells me the number. Based upon the number, I’m the one who knows what to do and can jump into action, such as going downstairs to get her what she needs to bring her blood sugar back up. I don’t want her walking down stairs and moving around in the dark with low blood sugar.
Nadia: Your agreement about how to handle low blood sugar episodes makes sense. But if someone’s having a low blood sugar event, do you worry that she might forget your agreements?
Chris: It’s certainly possible. For one of our sessions at last year’s conference, we brought in a professional to give us something more than a layperson’s perspective on this topic. Janis Roszler, a psychologist and a therapist who works extensively with people with diabetes, talked about having these types of conversations. The best time is when your partner’s blood sugar is normal. We stressed making sure to sit down with your partner and letting her know that she doesn’t have this disease alone. “We have this together and are partners in this disease.”
The partners who attended in 2012 felt that their primary role was to take care of their families, including their partner’s health. We want to know and be involved because that’s one of the areas where partners can feel inadequate. When we’re left in the dark of about our partners’ health issues, over time it affects our self-esteem. At the same time, while we want to fulfill our duty to take care of our families, it’s also important for us to remove all hints of being judgmental. People with diabetes, especially women, quickly pick up on any tone of judgment or blame. They’ve heard it from so many different avenues all their lives, so they don’t need to hear it from us.
One of the things Janis mentioned sharing with her patients is her advice to give diabetes a name. If the blood sugar is low or high, you can say, “Hey, ‘Charlie’ is acting up today.” So it’s not the person who’s at fault, it’s this thing they’ve named “Charlie” who’s acting up. If you have your day planned to go to the movies, or shopping, or whatever, and your partner has high blood sugar and doesn’t feel like doing anything, it’s easier to say, “Charlie’s acting up today. He’s kind of high, so I need to rest for an hour or so before we can go out.” It helps men to not subconsciously blame their partners for having a high or low blood sugar.
We tried to share during last year’s conference that partners want to be involved, and Janis helped embed that point when she went to speak to the women. We’d planned for her to address the partners first, then the women. While she didn’t share word for word what the partners said, she let the women with diabetes know that having their partners at the conference was a step in the right direction because it allowed the partners to show they cared.
She was letting them know that you have to allow your partner to support you in your diabetes so that you don’t feel alone, or as though it’s all your fault, or that you’re the only one who’s responsible for your health.
Nadia: How did you feel about it when you met a woman like Brandy who had diabetes? What were your thoughts and fears?
Chris: Actually, within a couple of days after meeting Brandy I asked her about it because she had an insulin pump. She was wearing it on the exterior of her clothes on a clip. This was back in 1996 and I thought it was a pager. I jokingly said, “Are you that important that you have a pager?” That’s when I learned she had been on an insulin pump for just over a year, and that it was still relatively new to her.
I didn’t know anything about diabetes. This was, of course, before the onslaught of the Internet. Brandy shared with me as much as she knew about it at the time. She was 20 when I met her and had been diagnosed with diabetes for five years. She was still learning about disease. She taught me as much as she could and that did not deter me from dating her. We were going to learn together.
Diabetes didn’t change who she was as a person at the core. She had a lot of good healthcare providers who shared information with us, and we realized as learned more and the years went on that if Brandy took care of herself it would not keep her from living a long, healthy life.
Nadia: Chris, thank you for taking time out to inform our readers about the Partners Perspectives Program at DiabetesSisters’ Weekend for Women Conference. How can people find out more information or register to attend?
Chris: You can read all of the information, including the agenda, at www.diabetessisters.org. Look for the Weekend for Women Conference webpage, and there, you’ll see a section about the Partner’s Perspective Program.
I really want to see this program grow because I know there are a lot more men and partners out there who could benefit from this type of support and education. In fact, they could probably earn major points with their wife or partner by enrolling both of them to attend the Conference. What woman with diabetes wouldn’t be impressed with that kind of initiative?