Even a few weeks after the Diabetes UnConference in Atlantic City, I’m still having a difficult time getting my mind about how my soul feels about the experience.
There was the tidal wave of feelings there, and several of us were blinking back exactly what we called “BoardWalkDust,” referring to the tears it all brought to our eyes.
This was the next Diabetes UnConference — a exceptional opportunity for adult PWDs (people with diabetes) to discuss their experiences and learn in a participatory format — coordinated from the non-profit Diabetes Collective. It had been held Sept. 9-11 for the first time in Atlantic City, stepping outside Las Vegas where it’s been held twice previously.
What, Who and Why?
You might wonder what causes a convention “Un”? The point is to break down the tenets of traditional conference format, to make a free-flowing atmosphere that “allows participants to create and mild the agenda, allowing for a huge array of topics and perspectives which may never be covered in a traditional conference… using various sharing methods that concentrate on drawing out responses from all attendees so individuals in the room can learn from each other in a peer to peer environment”
At The Diabetes UnConference, to put it differently, each participant is a professional. All attendees can ask and answer questions and learn from their peers in a safe setting where there is no judgment or incorrect response.
There were 76 people attending, with 11 being so-called “kind awesomes” — spouses, spouses, boyfriends/girlfriends of PWDs. In cases like this, they have been referred to as PLUs, or People who Love Us. In general attendance was a little down from the 106 total in the last Veges occasion (26 of those being PLUs), but that is probably because of it being the first such occasion in the East Coast. And each and every person who had been there was supposed to be there, as our host and good friend Christel Aprigliano put it during her opening and closing comments.
That meant a total of 1,300+ years of joint diabetes experience in 1 place!
The crowd ranged from newly diagnosed within the last year or two to long-timers with over 50 years experience. There was a wonderful contingent of people with type 2 attending, and a large point was made not to concentrate 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, distinct sections of Canada and even as far ss Northern Ireland and Great Britain!
However, what exactly happened and was said in the UnConference isn’t something you will find here — or anywhere. All attendees are requested to agree to a social networking blackout, so we can all be super candid and current in the moment. It is a pact to honor each others’ privacy, as some straight-from-the-soul-stuff has been shared. We laughed, cried, talked badly and bared our senses of humor. It was all raw, emotional, honest. And most importantly, there was always honor and support. And many hugs.
We could 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,” later attending the very first UnConference in Vegas in March 2015. I had an idea of what to expec. But once more, I thought that the organizers hit it out of the ballpark with an eye-opening- soul-bearing experience which isn’t replicated anywhere else.
But a lot has changed for me since early last year; my mind was in a different location, and most importantly I had been there with my wonderful Type Awesome spouse, Suzi.
This was our first time attending a conference together, and it was fine to preface it with a few days of mini-vacation in nearby waterfront communities prior to heading into the Atlantic City Boardwalk for this particular cardiovascular occasion.
That made this an entirely different experience for me personally — one where I had been less in search of peer support for myself, but more for how it may benefit both of us as a couple. That formed almost all of my discussions 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 could say is it was good to hear about a couple of significant efforts that encourage the Entire peer-support notion:
Research: Fellow type 1 Heather Gabel is studying ways to create clinical data on the importance of diabetes peer support, using a procedure called “participatory action research,” meaning each step of the process is participatory (even the layout) and it’s aimed at taking immediate action on something such as coverage. She is connecting with PWDs in the community and is likely some virtual focus groups. If you’re interested, you can achieve Heather from email.
DiaBoogle: It was great to be reminded of the “Google for diabetes”attempt called DiaBoogle. Conference-goers agreed it’s an outstanding resource. Created by longtime kind 1 peep and advocate Bernard Farrell, it filters out all search phrases associated with diabetes, and now lists 700+ diabetes sites among other resources.
Meanwhile, the UnConference provided great peer-support. There are laughs, tears, hugs, deep talk and casual conversation, so many distinct feelings flying every which way. But that description doesn’t seem enough.
I took a lot away from 1 session particularly about Unspoken Fears. I realized in listening to other people that there are some particular emotions and points I had never explored before. Those include problems like growing old and being a burden, the emotional roller-coaster that could come with diabetes data-sharing, and overall just the emotional toll it can take attempting to “be strong” when you don’t feel that way about your health.
While that might sound negative, it was really cathartic to discuss this material with my peers while Suzi was correct there to listen and participate. How can I inspire other people to make the attempt to be part of one of these terrific events?
At the end of this conference we have been asked to compose a one-word reaction on a note card. I composed “complete” because that is the way I felt in the moment. Including everything from emotionally fulfilled to complete of knowledge, joy, compassion and so forth. I happened to also eat a good amount of seafood while there, so that added a dimension as well. 😉
With that, I want to welcome my beautiful Type Awesome wife Suzi to discuss her POV on attending the UnConference for your first time… For those who haven’t discovered our story before, I invite you to check out her “I’m the One” guest article from 2011 and a number of the additional past guest articles Suzi has composed for us here in the ‘Mine. She is pretty amazing, no? (and btw, Happy Wedding Anniversary this Saturday, my dear! )
The PLU (People who Love Us) Perspective
From Suzi Hoskins
To be honest, I wasn’t really sure what to expect from my first Diabetes UnConference in Atlantic City. I have only really attended two conventions — one in college for environmental studies (kinda dull…), and another was CWD’s Friends For Life in 2013 (Orlando… Disney World… kinda amazing).
During that FFL convention, there was just 1 session for couples and you for spouses/partners. That’s it… I get that it’s the CWD conference and in that time, there weren’t a lot of sessions specifically for adults who have diabetes or spouses/partners. But that has been my only frame of reference, and I know it’s expanded over the last few years. But when that is your only frame — it’s scary to put yourself out there and start yourself up to a group of strangers. And as fantastic as this UnConference turned out to be, it had been hard for me going into it.
Fortunately in this instance, the group of strangers proven to be family and friends on multiple levels. I felt a quiet sense of belonging, welcoming, and understanding (or as Christel stated: “Welcomed, Valued, and Respected.”
Yes, to all three.
Like I said, I haven’t had a lot of conference experience… but in my own view, for being deemed an UnConference, it had a very “conference-like feel” for it. So, really it’s more a convention run from the participants than by some separate organizers running the series as with other conventions.
I guess I have heard the most feedback and took the most from that which we discussed in the PLU session. There were 11 of us in that spouses/partners track, more affectionately called PLU (people who love us – I know, a letter is missing… it kinda confused me, too).
There was conversation, plenty of laughter and a few tears drop. We found that we weren’t alone in our feelings. I really don’t think many of us realized that our fears are exactly the exact same in so many ways. We do really “make 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 cherished PWDs which “you don’t get what it’s like for us,” because you don’t. However, it doesn’t lead to anything good, and just brings on more exclusion. So, we choose to suck up a lot it for the larger good.
1 eye-opening aspect of this UnConference, for me personally, was that this group of PLUs came together in our sessions to make a list, of sorts, sharing the way we felt toward our cherished PWDs ( all these acronyms are somewhat much, aren’t they?!)
Our PLU session facilitator Bennet Dunlap compiled a general, non-identifying list of exactly what we may want our loved ones to know. And though nothing special is assumed to be shared from the sessions, and we agreed not to use our phones or social media during the program, a number of us wondered whether that list may be shared more publicly post-conference.
Christel and Bennet made it happen! I’m excited to share that list here, along with the little note which has been inserted on the personal FB group for People Who attended the UnConference and are now “alumni” — in the hopes that it will help cast more light on our POV as PLUs, so to speak:
What We Need Our PWDs To Know:
As PLUs, we feel validated knowing others have similar experiences encouraging their PWDs. We’ve got only the best intentions but are worried that we are not doing ‘it’ correct, where IT signifies: The mechanics of diabetes care as well as the emotional support of you, our PWD.”
We’re sometimes AFRAID, especially of lows, and we could be uncertain of our role, especially when diabetes takes you away from us. At times, even when we know we shouldn’t, we still take what you say when when you’re having a blood glucose excursion and are not current, personally.
As you don’t want to get defined with diabetes, we don’t want to be defined because the significant other of diabetes. That does not mean we are any less supportive. We don’t 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’re frustrated that diabetes takes energy and time out of our relationship. We don’t know who (or what) to blame for that because diabetes is inanimate.
We need your help discovering US amid the compromises diabetes takes from US.
When reading the list, Bennet (who blogs over at Your Diabetes May Vary) had this to share:
“We frequently hear PWDs say NOBODY requested for diabetes. Nobody had a choice. You, the PLUs, chosen in, in several cases to present diabetes. You are the only people I have even met who have ‘chosen’ diabetes”
Bennet Dunlap, Diabetes UnConference facilitator
With that, there is not anything more to say. So, I’m out.
Yep, that is the nuts and bolts of how I feel, too.
This UnConference was different for me because it was about both of us collectively, and more broadly all of us collectively. Here’s to casting a mild and cheering on peer-support, in all its forms.
Next for your UnConference
The following Diabetes UnConference will be Feb. 10-13 in Las Vegas, and if you’re so inclined you can apply for scholarships to help cover the way to attend.
And then next dip, the Diabetes UnConference will soon be returning to the East Coast, intended for the Washington D.C. area on Oct. 10-13, 2017. For the first time, this is going to be a co-located event including both the Diabetes UnConference along with the DiabetesSisters favorite Weekend for Women occasion in precisely the exact same location.
The DiabetesSisters weekend has actually been on hiatus since 2014, and all the hosts are enthusiastic about bringing it to life and bringing these events collectively in the Eastern area of the U.S. next calendar year. No doubt, there will be good experiences for everybody!
I would love to thank those who played a part in putting with this Diabetes UnConference, especially Christel, who took an opportunity in producing this UnConference, along with her whole team of facilitators this around who made this experience exactly what it had been.
If you haven’t had the chance to attend, I expect you think about experiencing the UnConf on your own. And of course, think about bringing your PLU together too!
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