Social media, and the expansion of the Internet is general, has significantly changed how each of us searches for and finds information, builds communities, and communicate with one another. But one of the biggest changes has been the way the diabetes community has evolved. Before it was possible to jump online and share information with others, diabetes was something you discussed mainly with your physician, and with any close friends or family who may or may not have T1D experience.
Today, the internet – and especially social media – has brought together the community to support diabetes in a way that was never possible before computers. Now, we can reach out to others who understand what types of challenges we face and exchange information and personal stories which can make living with diabetes a much more comforting thing.
Blogs, like some of our favorites that we’ve mentioned before, have become the cornerstone of the DOC by helping bring together other people with T1D and fostering conversations. Those conversations spilled over to social media, forums, and other online platforms, and now we even have our own social media advocacy group – the DSMA.
The DSMA, or Diabetes Social Media Advocacy group, exists solely to help people with diabetes find and utilize diabetes centric organizations, support groups and forums, and diabetes blogs. They also were one of the first groups to organize a Twitter chat dedicated to a Q&A on living with diabetes. It happens every Wednesday at 21:00 US eastern standard time and you can find it by following @diabetessocmed and searching for the hashtag #dsma.
In fact, the diabetes online community has grown so large, so rapidly that it’s garnered the attention of data scientists who are interested in how these communities and conversations are helping shape the state of diabetes care.
An interesting story in The Atlantic recently talked about a data scientist named John Kelly who tracks conversations within specific communities online through publicly shared data, like blog comments, forum posts, and social media updates. He takes these stories and turns them into a map of sorts that helps explain what kinds of conversations are happening around diabetes, and where and who they’re coming from. What he found within the DOC was that while there was a strong diabetes community, it revolved around three distinct groups: healthy living; persons with diabetes; and the medical community.
The healthy living group was more focused on preventing [Type 2] diabetes through eating well and staying active. The medical community consisted of companies that cater to persons with diabetes, as well as the scientific and research community, and focused mainly on sharing medical reports related to diabetes research. The third group consisted of the diabetes community (largely Type 1) and their families, and focused on the lifestyle aspect on living with diabetes. The odd thing was that even though these communities had strong communication individually, there was very little overlap between the three – and especially between the medical diabetes communities and people living with diabetes
There’s not a cut and dried reason for the strong divide between those of us that live with diabetes, and those that work to find a cure, but the article mentions that it could be due to the fact that the medical community doesn’t necessarily share information in a way that’s easy to understand and conducive to sharing. And sometimes the only thing you want to do after a challenging day is pull up your favorite blog and commiserate.
Either way, it’s no surprise that banding together to talk about diabetes, share experiences and hardships, and celebrate successes and milestones is a huge boon to the diabetes community. Social media has become an integral part of managing diabetes for lots of people, and continuing to share those experiences can only be a good thing.