Staying Honest, Positive, and Open with Diabetes – A Panel Discussion from Diabetes Experts at the AADE 2014 Conference

By Alexander Wolf, Varun Iyengar, and Nancy Liu.

Twitter summary: Even the experts struggle w/ #diabetes: what this #AADE14 panel had to say about how to be honest about diabetes

Short summary: At AADE 2014, a panel of five diabetes educators and advocates (Jennifer Block, Jill Weissberg-Benchell, Jeff Hitchcock, Kerri Sparling, and Bennet Dunlap) discussed their best ideas on how to cope with the burdens that come with diabetes: keep realistic expectations, find a supportive community either locally or online (or best, both), and have open communication with your health care team about when you are having a challenging time and how they can help.

At the AADE 2014 Conference, we attended a most valuable panel discussion on the role of social media in helping people with type 1 and type 2 diabetes deal with the burdens that can come with diabetes. The panel was filled with experts and advocates from various realms of the diabetes world, and featured:

• Jeff Hitchcock – Founder of Children with Diabetes (and father of a child with type 1)

• Jennifer Block – Nurse Practitioner and Research Nurse, Stanford University and Lucile Packard Children’s Hospital (and a patient with type 1)

• Jill Weissberg-Benchell – Pediatric Psychologist in Child and Adolescent Psychiatry, Associate Professor of Psychiatry and Behavioral Sciences, Northwestern University/ Ann and Robert H. Lurie Children’s Hospital of Chicago

• Kerri Sparling – Creator, Author of SixUntilMe.com, diaTribe contributing writer (and patient with type 1)

• Bennet Dunlap – Health Communicator and Consultant, Your Diabetes May Vary (and patient with type 2, and parent of two type 1 children)

The panel shared enormous knowledge about diabetes, and notably, even with their expertise and insights, one thing stood out: everyone struggles with diabetes management. During the discussion, every member of the panel highlighted how challenging diabetes can be, both physically and mentally.

However, the panel also stressed that community (local or online), motivation and support, honest and open communication with a health care team, and realistic expectations about diabetes goals can all be key to coping with these obstacles. Below are some of our favorite moments from the discussion:

TAKING THE GUILT OUT OF DIABETES MANAGEMENT

Kerri: I think one of the most challenging things about diabetes is that you don’t get time off for good behavior. You can spend a whole day doing all the things right, and what’s the reward? You have to do it again. You have to go and do the same thing, and it wears you out. I think even my family has trouble understanding this sense of being burned out. I get burned out doing the right thing. It’s a psychosocial burden as much as a physical one. I have trouble having people understand that. Because, at the same time, I don’t want to sound like a pity party – that isn’t fun.

Bennet: The stress that Kerri just spoke about is different for a parent. The fear of hypoglycemia is a real psychological burden for parents. It’s not the hypoglycemia itself – it’s the fear of hypoglycemia. I think that’s a function of the 24/7 nature of diabetes. But that’s part of living with diabetes, and I hope it becomes recognized as part of the clinical visit.

Jennifer: As a provider, I used to approach diabetes differently than I approached it myself. I used to feel as if I had to put up a front that I could do this every day without being burdened. But it was the online community that I learned from. And what I learned is that I’m not perfect at this, and it’s OK to admit that this is hard to do. And by admitting that, as providers, we’re empowering people.

Jill: For parents, I think the question is whether they’re doing enough for their child’s health and safety. As health care providers, it’s important to think about what contributions we might be making to the fear and guilt. Yesterday, I talked to a mom who shared a story about the stress of taking her child to the endocrinologist. They had had a bad day managing blood glucose values the day before the visit – because of a bad vial of insulin – and she was afraid to take her child to the endo. She felt he was likely going to hyper-focus on yesterday, despite it just being a bad vial of insulin, and ignore the previous weeks of success. As providers, we need to think about that. We need to partner with patients and families, so that we don’t promote these feelings of shame and guilt and fear.

Kerri: You’re right in speaking about this stress of visiting your provider. When my A1c comes back and it’s good, people say, “Good job.” And when it’s bad, people say, “What did you do wrong?” So there are emotions automatically and immediately assigned to that value even though it’s just one statistic.

Jennifer: To me, every single time that things work out, I want you to celebrate it. But when things don’t work out, accept that it is just diabetes. I think we need to be really humble in our approach with people. I think we’re all here because we want to help our patients. But I’m not sure how we help them when we’re making them feel guilty.

STAYING POSITIVE AND HONEST

Jeff: There’s this overwhelming fear of the complications of diabetes. But what we’ve learned is that if you stay engaged in managing your diabetes, that’s a path you need not see. My guidance is to echo this: Do the best you can every day. What we really want every day are the coaches that teach us how to play the game well. Sometimes we’re going to drop the ball, run toward the wrong goal, but with you as our coaches, that gives us the strength to go back every day.

Bennet: I would encourage providers to understand that there are unique emotions and stress associated with diabetes. But where can we transfer it? You don’t get a get-well card for diabetes. And you don’t get the reward of feeling better. So it’s hard to move that anxiety to something else. But when I go to the online community, I can find inspiration. I have a friend who I get inspiration from. He’s a bicycler and whenever I’m down, I see pictures of him biking and get back on my own bike. So people should get online and help each other out.

Kerri: It struck me when you [Jeff Hitchcock] said you try your best every day. But I don’t try my best every day. I would be lying my face off if I said that. I need to be honest with my doctors about where I’m struggling. I don’t want to be judged for saying that I didn’t check my blood sugar in the morning or that I didn’t respond to a blood sugar over 200 mg/dl. I need to be honest with my health care professional, so that I feel comfortable to share that.

Jeff: Doing your best sometimes means saying, “I’m not going to check my blood sugar this morning,” and taking a break.

Jennifer: I often don’t have the right answers to diabetes management, as a provider, but sometimes the parents and families I work with do. And by having open conversations, we can make changes. Because if I’m the only one making a decision, it’s not going to be as effective. So as a patient, you’ve got to open the door. I’m not living with your diabetes. You are.

Bennet: A week ago, I found that in giving a peer support for type 2, I owned mine much more. Someone came to me and said that she has diabetes. Her doctor asked her to get a meter and test twice a day. She came to me and said she doesn’t know how this works. I sat down, and we went through how to check her blood sugar, and she kept getting Error 5. And I kept laughing, and she was getting frustrated. I said, that is just a part of diabetes, and I have a friend whose license plate is Error 5. And we talked about the conversation she should have with her doctor. This person was my sister. And I was empowered by this interaction. I get empowered by working with other people. 

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