Have you ever used social media to share something about diabetes? Whether writing or reading blogs, using diabetes forums, downloading podcasts or interacting on Facebook or Twitter, people affected by diabetes are sharing more and more of their experiences online.
In fact, a recent survey of people living with diabetes, presented at the American Diabetes Association’s 76th Scientific Sessions, found that people who frequently post diabetes management information or advice may help others make lifestyle changes for diabetes management, and that greater adherence to exercise and blood sugar monitoring was associated with a higher likelihood of offering advice about diabetes care. (Read the full study abstract.)
Here on The DX, people whose lives have been affected by diabetes describe some of their experiences online and what they gained from sharing with others:
Mallory Gricoskie, whose husband, Kyle, lives with type 1 diabetes, said she first connected with the DOC following a series of overnight low blood sugar scares.
“I was preparing to take a work-related trip out of state, and I couldn’t shake crippling feelings of worry. What if his blood sugar dipped when I wasn’t there? I found a forum on the American Diabetes Association website, and I spilled my guts.”
When Mallory returned to the forum, she said there were “many uplifting messages of support” waiting for her. “I wasn’t alone,” she explained. “I felt like my feelings and worries were validated. I felt like I had an army of people I had never met behind me.”
“I use Twitter specifically for connecting with the diabetes online community,” Kate said. “There is so much knowledge, support and camaraderie to be found.” (Kate shares her tips for connecting with others on Twitter.)
Kate said she believes it’s important for people living with T2 to speak out against the attitudes and myths that sometimes stigmatize them. “The idea that gets under my skin the most is that we have type 2 diabetes because we’re just fat, lazy slobs. … To me, that fuels the guilt and bad feelings those of us with type 2 can experience and often may keep people from taking care of themselves.”
Kate added: “When we hear someone speaking an untruth or perpetuating a bad joke, I think it’s important for all of us who live with diabetes to speak up and say something, not in an angry way but to educate. Say, ‘You know, you’re wrong and this is why.’”
Some may wonder how people fit in time for interacting online with regular real-life tasks and commitments. Tim Brand, a father of one boy and three girls, two of whom live with type 1 diabetes, talked about using his smartphone to balance social media time with family time.
“I can check all my social media accounts sitting in the parking lot at school, on break at work, when my wife falls asleep watching a movie, or during a commercial break,” he said. “I check Facebook first because many of those are my personal friends, and it’s easier to see important diabetes research updates. However, if it is family time, I’ll wait to check social media because family comes first.”
“I’ve learned so much over the years from other[s],” Ryan said. “Since diabetes is a self-management disease, we really learn best from each other, whether on blogs, forums, or just chatting on Facebook. I try to do my part in this community by showing others that diabetes doesn’t have to stop you from going anywhere or doing anything.”
D-mom and Spanish-language blogger Mila Ferrer shares Ryan’s passion for community.
“I enjoy the many benefits Facebook provides like sharing images, videos or a note, the private inbox, chats and closed groups, which allow you to customize and have a more personal relationship with your readers.”
Mila emphasized the role that online networks play in raising awareness. “Using social media to raise awareness has allowed us to bring our message of education, support and empowerment to thousands of families affected by diabetes. It’s the perfect tool to let people know they are not alone.”
“I find that there are topics that come up naturally in conversation with my guests on Juicebox that I might have avoided writing about on my blog,” he explained. “There’s just something about a conversation that opens things up.”
Scott emphasized the off-the-cuff nature of podcasting, even compared to the relatively casual nature of blogging and other social media, and said that he values impromptu conversation because of the unique insights it may lead to.
“I’ll be in the middle of the interview and feel like I know what they’re going to say – and when they don’t, which is often, I’m getting something really valuable.”
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Mallory Gricoskie, Kate Cornell, Tim Brand, Ryan Attar and Mila Ferrer received no compensation for their interviews on Discuss Diabetes; Scott Benner received no compensation for his interview for The DX. All opinions contained in this post reflect those of the interviewees and/or contributors, and not of Sanofi US, its employees, agencies, or affiliates.
“Certified Diabetes Educator” and “CDE” are certification marks owned and registered by the National Certification Board for Diabetes Educators (NCBDE). NCBDE is not affiliated in any way with Sanofi US. NCBDE does not sponsor or endorse any diabetes-related products or services.
© 2016 The DX: The Diabetes Experience