“Social media” often has negative connotations of insensitive tweets and postings about what someone had for dinner. In the community of persons with diabetes, though, “social media” has become a dynamic education and counseling network, and diabetes professionals can become the students online to improve communication with their patients.
“If my A1C is out of range, I hear ‘What did you do?’ Out of the gate emotions are assigned. I find that stressful. I don’t want to be judged. That’s a sticking point,” said Kerri Sparling, who has had type 1 diabetes for 27 years. “I want to be a good girl, and I’m trying.”
Sparling is a young mother and author who uses her blog to let the world — especially other persons with diabetes, their families and diabetes professionals — know how difficult it is to spend a lifetime dealing with a condition she can’t always control, such as when she was pregnant.
“You get no time off for good behavior,” she said Friday in the breakout session “The DOC Rx: The Role of Social Media in Managing Type 1 and Type 2 Diabetes.” “There is certainly burnout from something that doesn’t give you any breaks at all. I still struggle for good results. I get a different result every time I do the same thing. I really struggle with trying to explain that to people.”
Sparling was one of five panelists at the emotional session. A second panelist, Jennifer Block, FNP, NP-C, RN, CDE, CDTC, is a person with diabetes and a diabetes educator, who heard Starling’s message and encouraged other diabetes professionals to listen.
“As a diabetes educator it is humbling to hear this. I acknowledge how challenging this is. When it doesn’t work, you need to acknowledge that is diabetes,” Block said. “I get sick to my stomach when I hear these sentiments. I think we are here because we want to help them, but we aren’t helping them if we make them feel guilty.”
Bennett Dunlap has type 2 diabetes and two children who have diabetes, and runs the website Your Diabetes May Vary. He offers a parent’s perspective online and said he hopes families and diabetes professionals are getting the message.
“There is a fear of hypos that is a psychological burden for some patients,” he said. “I hope that dealing with that gets to be part of a clinical visit.”
Panelist Jill Weissberg-Benchell, PhD, CDE, said it is important for healthcare professionals to visit online sites to learn how patients feel.
“Shared experience is powerful and life-changing,” she said. “It is important for healthcare professionals or loved ones to read what others say. That is a powerful piece of the online community.”
When audience members expressed concern that patients may get bad advice online, all of the panelists said they take the good with the bad, but trust the patients.
“We owe it to our patients to teach them to be savvy consumers of information,” Block said. “We need to tell patients not to do some things without having a discussion about it.”
That community support came out when Kelly Kunik, an audience member and person with diabetes, talked about getting support after midnight on Twitter when her glucose levels were too high. Block left the stage to give Kunik a green bracelet that identified her as a person with diabetes at conferences. Attendees without diabetes wear orange bracelets.
Moderator Jeff Hitchcock, president of Children With Diabetes, explained the importance of the bracelets and encouraged diabetes professionals to stay in tune by going online, adding, “The way you ask and the way you speak matters.”