I’m old enough to remember when support groups for various health issues were a local affair, advertised in agate type in the newspaper and drawing a handful of individuals to church basements and elementary school cafeterias.
When the Internet emerged, one of the first hyped health applications of the World Wide Web was the idea that patient support could be moved online, and peer-led education and aid – freed from geographic and temporal constraints — would flourish.
The premise behind that promise turned out to be, at best, overstated. Especially in the early days, those communities were not particularly easy to find, particularly social or particularly stable. Disconnecting the phone, plugging in the modem, and waiting for the static-and-beep of dial-up internet wasn’t a guaranteed ticket to a Shangri-La of personal connections.
But there was, from the earliest days, a notable exception: the diabetes community, particularly the community of people with type 1 diabetes, managed to create safe spaces on the web early on, and those early social efforts have tended to stick around. Many of those who established beachheads in the early days of blogging are still out there, forming the core of a group known as the Diabetes Online Community.
But the D.O.C., arguably the most successful constellation of voices in any therapeutic area, didn’t arise fully formed. It had seemed that way to me, but we at W2O Group knew that there had to be a deeper story.
We decided that we needed an in-depth look at the backstory, a Social Diabetes Project, and reached out to Kerri Sparling. Sparling has written the blog Six Until me for well over a decade, giving her a unique vantage point to craft an oral history of the D.O.C.
But what Kerri delivered, and what makes up the core of the first-ever Social Diabetes project, is an oral history that goes back well beyond the birth of the blog. In their own voices, Kerri has excavated the foundations of one of the web’s great collectives, and we’re excited to present it here.
The D.O.C. evolution isn’t over; year-over-year, conversation online about diabetes are only increasing, pulling in an ever-wider group of topics that has expanded from a narrow, blog-based focus on diabetes management to one where issues of diversity, advocacy, and technical know-how are a part of the conversation on every platform.
Reading Kerri’s work, we came away convinced that understanding the D.O.C. history helps shine light not only on the diabetes community, but that it illuminates the broader processes and motivations under which individuals have – and will – come online.
The report, in PDF form, can be downloaded here. We’re grateful to not only Kerri, but the countless individuals who shared their stories with her to make this oral history possible.