Conferences attended by members of the Diabetes Online Community have always been surrounded by intrigue. Who gets to go, who pays for what, who feels excluded, who feels included. Reading posts in My Diabetes Secret makes you wonder if this community is as united as we think. I for one have been skeptical at some point; I have felt excluded because of my type of diabetes, or simply incapable of participating to the same extent many others do. I have done my best to do a little—successfully and unsuccessfully. I am sometimes afraid to share my ideas or implement them, and I have felt inadequate when life gets in the middle of trying to be an effective diabetes advocate.
Last year I decided I needed a break. I stopped participating actively in the DOC, and I took time off projects like DSMA en Vivo to regroup and think about my own diabetes management. I don’t know if I should call it diabetes burn out… but I felt like I was trying to give too much and was getting too little in return. I may be an advocate, but first and foremost, I am a person with diabetes who also needs support to deal with the intricacies of a chronic condition that gives you no time off. And to be brutally honest, I even felt like just another person with a twitter handle but no real connections.
When I first heard about the Diabetes UnConference, I imagined it was going to be yet another event where companies would gather PWDs like cattle, or they were going to bombard us with a lot of facts about diabetes technology that would go over my head, so I didn’t pay too much attention to it. Then my dear friend Jennifer told me I should come and we could be roommates. That was the motivation I had to even think of attending the conference… to meet a really good friend in person. Other than that, my expectations were low, but I went ahead and booked the flight, booked the hotel and registered. Many months passed, and the conference went completely off my radar. I was taking a break from social media, and I wasn’t even getting emails about it. Then little by little, announcements started coming, and I started getting excited. But my expectations were still low… and then I arrived in Las Vegas.
If you are reading this post wondering how we all got there, if we were bribed or enthused by a shiny marketing campaign, let me tell you we all dipped into our own bank accounts because we simply wanted to be there (of course there were sponsors whose support we are so grateful for, but the dynamic was completely different). If you are wondering if the only people present at the conference were the big fish of the DOC, let me tell you I was glad to see so many new faces and hear the stories of so many people that have, at some point, felt like they had no place in this community but found a safe place to land. The UnConference wasn’t about learning from the experts… not the kind of experts you are thinking about anyway. It was about connecting as patients.
I won’t go into detail about what went on in that conference room—what happens in Vegas stays in Vegas—mostly because it was so personal, so deep, I would feel like I am destroying the trust we were all so fortunate to gain. But I can tell you one thing: never in the 7-8 years I have been an active member of the DOC have I come back from an event feeling this raw, this emotional, this crazy… this so freaking awesomely finally understood. And there have been a lot of tears, because it’s dusty in Las Vegas, but mostly because every single person who attended the Diabetes UnConference left a mark in my heart. And for 15 years I have kept so much inside me, about how hard it is to live with diabetes, and it finally came out with tears, laughter, tons of hugs and the most encouragement I have received in my 15 years as a PWD… person with diabetes, regardless of its type.
And we called it #VegasDust.
Photo credit: Christopher Angell