Even a few weeks after the Diabetes UnConference in Atlantic City, I'm still having a tough time getting my head around how my heart feels about the experience.
There was quite the tidal wave of emotions there, and many of us were blinking back what we called "BoardWalkDust," referring to the tears it all brought to our eyes.
This was the third Diabetes UnConference -- a unique opportunity for adult PWDs (people with diabetes) to share their experiences and learn in a participatory format -- organized by the non-profit Diabetes Collective. It was held Sept. 9-11 for the first time ever in Atlantic City, stepping beyond Las Vegas where it's been held twice before.
What, Who and Why?
You may wonder what makes a conference "Un"? The idea is to break down the tenets of traditional conference format, to create a free-flowing atmosphere that "allows participants to create and moderate the agenda, allowing for a wide variety of topics and viewpoints that might never be covered in a traditional conference... using various sharing methods that focus on drawing out responses from all attendees so those in the room can learn from each other in a peer to peer environment."
In other words, at The Diabetes UnConference, every participant is an expert. All attendees can ask and answer questions and learn from their peers in a safe setting where there is no judgment or wrong answer.
There were 76 people attending, with 11 being so-called "type awesomes" -- partners, spouses, boyfriends/girlfriends of PWDs. In this case, they were referred to as PLUs, or People who Love Us. Overall attendance was a bit down from the 106 total at the last Veges event (26 of those being PLUs), but that's probably due to it being the first such event on the East Coast. And every single person who was there was supposed to be there, as our host and good friend Christel Aprigliano put it during her opening and closing remarks.
That meant a total of 1,300+ years of combined diabetes experience in one place!
The crowd ranged from newly diagnosed within the past year or two to long-timers with more than 50 years experience. There was a nice contingent of folks with type 2 attending, and a big point was made not to focus on type differences because we have so much in common on the peer-support side. And we had people joining in from the West Coast, different parts of Canada and even as far ss Northern Ireland and Great Britain!
But what exactly happened and was said at the UnConference isn’t something you’ll find here -- or anywhere.
All attendees are asked to agree to a social media blackout, so that we can all be super candid and present in the moment. It's a pact to respect each others' privacy, because some straight-from-the-soul-stuff was shared. We laughed, cried, talked seriously and bared our senses of humor. It was all raw, emotional, honest. And above all, there was always respect and support. And many hugs.
We can share our own POVs specifically, without divulging what others said. So here I go...
My POV from Atlantic City
I was honored to be there as an "alumni," after attending the very first UnConference in Vegas in March 2015. So I had an idea of what to expec. But once again, I thought the organizers hit it out of the ballpark with an eye-opening- soul-bearing experience that isn't replicated anywhere else.
But a lot has changed for me personally since early last year; my head was in a different place, and most importantly I was there with my wonderful Type Awesome wife, Suzi.
This was our first time attending a conference together, and it was nice to preface it with a few days of mini-vacation in nearby waterfront communities before heading to the Atlantic City Boardwalk for this particular diabetes event.
That made this a whole different experience for me -- one where I was less in search of peer support for myself, but more for how it could benefit the two of us as a couple. That shaped most of my conversations there.
As I noted the first time, I struggle to find the words to adequately describe the UnConference experience -- especially when I'm not supposed to reveal too much of what went on.
What I can say is that it was great to hear about a couple of important efforts that support the whole peer-support notion:
Research: Fellow type 1 Heather Gabel is studying ways to generate clinical data on the importance of diabetes peer support, using an approach called "participatory action research," meaning every step of the process is participatory (even the design) and it's aimed at taking direct action on something like policy. She's connecting with PWDs in the community and is planning some virtual focus groups. If you're interested, you can reach Heather by email.
DiaBoogle: It was great to be reminded of the "Google for diabetes"effort called DiaBoogle. Conference-goers agreed it's an outstanding resource. Created by longtime type 1 peep and advocate Bernard Farrell, it filters out all search terms related to diabetes, and now lists 700+ diabetes blogs among other resources.
Meanwhile, the UnConference provided great peer-support. There are laughs, tears, hugs, serious talk and casual conversation, and so many different emotions flying every which way. But that description doesn't seem enough.
I took a lot away from one session in particular about Unspoken Fears. I realized in listening to others that there are some specific emotions and points that I hadn't ever really explored before. Those include issues like growing old and being a burden, the emotional roller-coaster that can come with diabetes data-sharing, and overall just the psychological toll it can take trying to "be strong" when you don't feel that way about your own health.
While that may sound negative, it was really cathartic to discuss this stuff with my peers while Suzi was right there to listen and participate. How can I encourage others to make the effort to be part of one of these wonderful events?
At the end of this conference we were asked to write a one-word reaction on a note card. I wrote "full" because that's how I felt at the moment. That includes everything from emotionally fulfilled to full of knowledge, happiness, empathy and so on. I happened to also eat a good amount of seafood while there, and so that also added a dimension as well. ;)
With that, I want to welcome my lovely Type Awesome wife Suzi to share her POV on attending the UnConference for the first time... If you haven't heard our story before, I invite you to check out her "I'm the One" guest post from 2011 and some of the other past guest posts Suzi has written for us here at the 'Mine. She's pretty awesome, no? (and btw, Happy Wedding Anniversary this Saturday, my dear!)
The PLU (People who Love Us) Perspective
By Suzi Hoskins
To be honest, I wasn't really sure what to expect from my first Diabetes UnConference in Atlantic City. I've only really attended two conferences -- one in college for environmental studies (kinda boring...), and the other was CWD's Friends For Life in 2013 (Orlando... Disney World... kinda awesome).
During that FFL conference, there was only one session for couples and one for spouses/partners. That's it... I get that it's the CWD conference and at that time, there weren't a lot of sessions specifically for adults with diabetes or spouses/partners. But that was my only frame of reference, and I understand it's expanded over the past few years. But when that's your only frame -- it's scary to put yourself out there and open yourself up to a group of strangers. And as wonderful as this UnConference turned out to be, it was difficult for me going into it.
Fortunately in this case, the group of strangers turned out to be friends and family on multiple levels. I felt a quiet sense of welcoming, belonging, and understanding (or as Christel said: "Welcomed, Valued, and Respected."
Yes, to all three.
Like I said, I haven't had a lot of conference experience... but in my opinion, for being deemed an UnConference, it had a very "conference-like feel" to it. So, really it's more a conference run by the participants than by some separate organizers running the show like other conferences.
I guess I've heard the most feedback and took the most away from what we discussed in the PLU session. There were 11 of us in that spouses/partners track, more affectionately known as PLU (people who love us - I know, a letter is missing... it kinda confused me, too).
There was good conversation, plenty of laughter and a few tears shed, too. We discovered that we weren't alone in our feelings. I don't think many of us realized that our fears are the same in so many ways. We do actually "get it" when it comes to living with diabetes, because we are living with it -- we're in this together, after all.
We could just as easily say to our beloved PWDs that "you don't get what it's like for us," because you don't. But it doesn't lead to anything good, and just brings on more exclusion. So, we choose to suck up a lot it for the greater good.
One eye-opening aspect of this UnConference, for me, was that this group of PLUs came together in our sessions to create a list, of sorts, sharing how we felt toward our beloved PWDs (all these acronyms are a bit much, aren't they?!)
Our PLU session facilitator Bennet Dunlap compiled a general, non-identifying list of what we might want our loved ones to know. And even though nothing specific is supposed to be shared from the sessions, and we agreed not to use our phones or social media during the program, some of us wondered if that list could be shared more publicly post-conference. Bennet (who blogs over at Your Diabetes May Vary) had this to share:
What We Want Our PWDs To Know:
As PLUs, we feel validated knowing others have similar experiences supporting their PWDs. We have nothing but the best intentions but are nervous that we are not doing 'it' right, where IT means: The mechanics of diabetes care and the emotional support of you, our PWD."
We are at times AFRAID, particularly of lows, and we can be unsure of our role, especially when diabetes takes you away from us. At times, even when we know we should not, we take what you say when when you are having a blood sugar excursion and are not present, personally.
Just as you don’t want to be defined by diabetes, we do not want to be defined as the significant other of diabetes. That does not mean we are any less supportive. We do not want to keep score.
In a relationship, both compromise -- we both do for each other. But diabetes is part of the relationship and it never compromises for either of us. THAT lack of diabetes compromising is frustrating.
We are not mad at you. We are frustrated that diabetes takes time and energy from our relationship. We don't know who (or what) to blame for that because diabetes is inanimate.
We want your help finding US amid the compromises diabetes takes from US.
With that, there's not really anything more to say. So, I'm out.
Yep, that's the nuts and bolts of how I feel, too.
This UnConference was different for me because it was about the two of us together, and more broadly all of us together. Here's to casting a light and cheering on peer-support, in all of its forms.
Diabetes UnConference Appreciation
I personally would like to thank all who played a part in putting on this Diabetes UnConference, particularly Christel, who took a chance in creating this UnConference, and her whole team of facilitators this round who made this experience what it was.
If you haven't had the chance to attend before, I hope you consider experiencing the UnConf for yourself. And of course, consider bringing your PLU along too!