Remembering What Diabetes Community Looks and Feels Like
The concept of "community" has been on my mind a lot lately, as I watch the shifting winds of the Diabetes Online Community (DOC).
Specifically, all the emotions and connotations that come with the word "community" have been rolling around in my brain. Maybe it's my recent birthday that marks the final year of my 30s, or the fact that I'll soon hit my 34th dia-versary, or the recent loss of a beloved DOC friend...
Our community isn't the same as it was a decade ago, obviously. Not even the same as a few short years ago.
One of my observations is that these days, it seems more people with diabetes (PWDs) in the DOC are constantly on edge. Always fighting. Protesting. Walking around with metaphorical middle fingers up and not embracing the peer support side that started this whole contemporary DOC experience more than a decade ago.
It often breaks my heart, because I feel the connections and friendships that made this such a truly life-changing part of my world have become a secondary part of the DOC, trumped by the big policy issues of the day that run the gamut and ignite emotions.
Don't get me wrong: Advocacy is important. Here at the 'Mine, a big part of what we do is cover the diabetes news and many of those advocacy issues. This is advocacy journalism, diabetes-style. All of that's been a part of what I've experienced and appreciated in the DOC from the start. But it wasn't always front and center, whereas now it seems like there's a never-ending call to protest this or that, which drowns out the warmer "You Are Not Alone" message.
Recent occurrences within the DOC have highlighted all this for me.
In early February, our D-Community lost an incredible advocate and friend in Judy Reich. This longtime type 1 from Las Vegas was one of the kindest, most caring individuals you'd ever meet. Many of us are reeling from news of her death (a heart attack, which left her hospitalized for several days before her eventual death). I first met her at the inaugural Diabetes UnConference in 2015, held in Judy's beloved (and glitzy) hometown. We were instant friends, and over the years we kept in touch -- often talking diabetes but also sharing stories of Vegas, as well as media and journalism given her career in the Nevada Broadcasting universe.
Everyone who knew her talks about her love for sharing her diabetes story, what a passionate advocate she was, and an incredibly positive person. There were the "scary" aspects of diabetes complications that she shared publicly, but as a person you didn't see her dwell on the negative side. She was just a spirit-lifting soul who made your world better just by being in it.
I've read emotional tributes from DOC peeps like Mike Durbin, Kelly Kunik and Stephen Shaul about Judy, and what strikes my heart is remembering what brought us together in the first place -- not a big national advocacy issue, even though Judy was a passionate diabetes advocate. No, it was about simple peer support, along the lines of the D-UnConference mantra: "finding your tribe." Judy was a bright spot in our tribe, and those who knew her will never forget her.
Rest In Peace, Judy.
Meanwhile, recent DOC Twitter and Facebook threads have had many of us smiling nostalgically about the experience back in 2011, when D-peep Simon Boots traveled from Australia to the USA for the very first time. People were so excited to meet him in person that it turned out to be "a diabetes meet-up of epic proportions." In what was dubbed #Simonpalooza, he made a three-legged trip across the country from LA to New York, and dozens of DOCers came out to meet him, carrying homemade signs and shouting for him like he was a (diabetes) rockstar. The whole effort also gave many of us our first chance to meet in person, having only known each other online up to that point. We at the 'Mine even made a video about this epic trek.
A big part of what connected us all was the camaraderie of weekly #dsma discussions, led by the fearless Cherise Shockley who began that Twitter chat back in 2010. Many of us met Simon through that, and it all materialized into deeper friendships IRL (in real life) afterward.
After that first trip, Simon journeyed back to the US for the Friends For Life conference several times and was able to stop by my house once or twice. We had local meetups, and even got to swap T-shirts from our respective locales (I wore an Adelaide, Australia shirt while Simon got a Michigan shirt!).
I shared the #Simonpalooza story at a recent JDRF Summit panel on social media in Dallas-Fort Worth, noting how our online friendships can carry over into IRL meetups and relationships.
I do wonder if that's still happening as much today, with the DOC having grown so large with so much activity across so many varied channels -- from Facebook and YouTube to the visually-appealing Instagram, Tumblr and Pinterest, and even beyond to Q&A platforms like Reddit and Quora. There's just so much to choose from -- which is awesome! -- but it also feels less intimate, and frankly more intimidating to "get your arms around."
Also back in 2011, D-peep Kim Vlasnik started the "You Can Do This" project -- encouraging folks in our community to make short videos welcoming newbies, with motivating messages of empowerment. That was such a wonderful initiative, that somehow made viewers feel part of an intimate clan that understands each other. Heck, just a few years back, you could still post a goofy parody video without fear of being publicly dissed.
A broader community means not everyone knows each other, and with that can come suspicion of the "old guard." That's been the case from the start in many ways, but it just seems more pronounced these days. It may also be just the current contentious political climate in our country that's leading people to often start from a place of skepticism and anger. Which is a shame, IMHO.
We have to remember that we're all part of a club nobody asked to join, but being thrown in, we really can help each other if we start from a place of openness and positivity first.
Continually Evolving DOC
Of course, the DOC has been in a constant state of change since it's birth.
And change isn't a bad thing, it's just a natural progression.
In fact, the surge in advocacy is a good thing, as it's much needed. One only has to look at wins like Medicare's decision to cover CGM or the recent government renewal of the SDP program to see we are making an impact -- by working with orgs like JDRF and ADA. They're helping us reach outside our bubble to the general public as well as Congressional members and staffers, and insurance payors, to influence policy and decision-making. Bravo!
It's just that I hope we don't lose that spirit of camaraderie that so many cherished a decade ago, when many got into this simply to share stories and connect with others -- to not feel alone.
I guess I'm nostalgic for a time when "influencing" and advocacy weren't the focal point. I remember that time so fondly.
Then again, I was in my mid-20s then... and now I'm running up against the Big 4-0.
I'm not sure exactly how I may have improved with age, except for (hopefully) a gaining bit more wisdom than when I started out in this diabetes online universe. And with that wisdom comes the great desire to keep things positive, because life is just too short for bickering. I have high hopes for how the DOC can help us all, newly diagnosed to the very seasoned, as we move forward in 2018.
We're people foremost, and even if we disagree on advocacy ideas or views on the D-topic du jour, we can certainly come together on the core notion that we're part of a collective community with a shared illness, where we have each others' backs. Right?