The fifth Diabetes UnConference took place in Alexandria, VA, very recently in early October. This was my third time attending this unique, "unscripted" gathering of adults with diabetes, where every participant is considered an expert and can ask or respond to questions and learn from peers in a safe setting where there is no judgment or wrong answer.
There are so many diabetes events these days it's tough to keep track, and they often blur together. But not the UnConference, organized by the non-profit Diabetes Collective led by powerhouse D-advocate, longtime type 1 and good friend Christel Aprigliano. Rather than bringing a sense of "been there, done that," I find this event serves as a way to connect and expand the diabetes tribe and re-energize.
You may wonder what makes a conference "Un"? The idea is to forgo the traditional conference format in favor of 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, "no topics have been predetermined, no keynote speakers have been invited, no panels have been arranged. Instead, the event lives and dies by the participation of its attendees."
Note that the Diabetes UnConference is an intimate event, but some newsworthy items still always emerge -- I'll cover that shortly. One big piece of news is the announcement that this UnConference will skip 2018; the organizers have decided it's time to take a break to evaluate how the event should proceed. Bummer, given how helpful it's been to so many in just the few short years this conference series has existed.
Diabetes UnConf + Diabetes Sisters
For the first time, this Fall's UnConference was held jointly with the annual Diabetes Sisters Weekend for Women event. Attendees could sign up for specific sessions for either event, and/or visit joint general sessions for both groups, and the receptions and gatherings were open to all.
Among the 50+ UnConference attendees were many first-timers, and a handful of "PLUs" or people who love us (though my wife Suzi didn't attend this round - see her thoughts after the Sept. 2016 UnConference). For the Diabetes Sisters event, we're told 92 women registered and that included a total of 17 PLUs/partners from both events; this also included the 25 women who arrived early to attend the D-Sisters' third annual Leadership Institute that trains and educates the leaders of their local, in-person PODS support groups across the country.
As always, what happens at the D-UnConf... stays there. People are encouraged to discuss all manner of personal challenges and experiences, from intimacy to workplace issues to family struggles and so on. So attendees are asked to not tweet or post from sessions, or to share others' stories without first getting their express permission -- because it's their story to share, not yours. Seriously, a full social media blackout is called for; laptops are not allowed, and use of phones for texting or calls is discouraged -- although exceptions are of course made for using phone-based diabetes tech.
What I can share are some exciting items we heard about that are actually public news.
Dr. Oz and Diabetes: Diabetes Sisters member and PODS leader Anne Dalin from New Jersey will be featured on an episode of the Doctor Oz Show scheduled to air Nov. 3! She'll be discussing her experiences living with both diabetes and heart disease. We're told she'll be mentioning the non-profit Sisters group specifically, regarding the peer support and education it offers her that helps improve her life. While we've certainly rolled our eyes over the Dr. Oz Show some times in the past, but the sheer publicity of this is exciting. It will certainly showcase a serious issue along with a great group doing incredible work to help women with diabetes.
Peer Support at the IDF World Congress: It's great to hear news that peer support within the Diabetes Community, particularly in the context of what exists at these Diabetes Sisters and UnConference events -- will be getting more attention at the upcoming International Diabetes Federation World Congress set for early December in Abu Dhabi (the UAB in Middle East). These two organizations will be jointly presenting and moderating a poster on Dec. 6 at 11:30 am local time there. The focus is "Peer Support and Education to Better Thrive with Diabetes," and it will include survey results from past conference attendees showing the benefits of face-to-face peer support rather than just online interactions. The trio of D-peeps presenting includes UnConference leader Christel Aprigliano, Diabetes Sisters leader Anna Norton, and facilitator Nicole Bereolos. While peer support is getting more play at healthcare conferences of late, this is the first time anything like this is being presented at IDF's World Congress. Way to go, D-Team!
My UnConference Experience
I've attended an UnConference once a year since the inaugural Las Vegas event in March 2015, followed by the first East Coast edition held in Atlantic City in September 2016, and now Alexandria in October 2017.
Each time, the UnConference seems to be exactly what I need when I need it -- filling my heart and mind with so much happiness and "You Can Do This" spirit. As always, one of the most fascinating parts for me is seeing the newbies who raise their hands to say they've never been to anything like this before, but how much they really needed to be there!
Since the agenda is shaped by those participating, it takes whatever direction it needs to in the moment, with the facilitators guiding the discussions. With smaller numbers this time, I found it to be an even more personal and intimate conversation covering all kinds of emotional and D-management topics -- from tips and tricks and the tech and treatments we use, to how we talk to each other and loved ones, and concerns over choice and access and growing older with diabetes on board.
I shared some details about my own life struggles lately, and enjoyed countless conversations with new peeps and catching up with familiar friends on everything from D-life, to work, colonial America history and genealogy, craft beers and current news topics.
Personally, it was great meeting others who use Afrezza inhaled insulin and talking tips and tricks that work for each of us. Another topic that got me worked up was talking about how choice can often be taken away from us, whether as an access or affordability issue, or more emotionally tolling like the limitations we sometimes face making choices for ourselves because of diabetes. As I near my 40th birthday and move into my 34th year with T1D, the topic of growing older and becoming a burden -- whether complications are a part of the picture or not -- also becomes ever closer to my heart, so to speak.
Overall: So many hugs, laughs, tears, seriousness, sarcasm, and humor.
None of this would happen without the support of corporate sponsors, an issue that brings up a lot of varying views and emotions these days given all the access and affordability issues our D-Community is confronting across the board. Personally, I appreciate the industry sponsors helping to make this happen.
When I've looked around the rooms at each UnConference I have attended, and talked to others attendees, the appreciation is unmistakable: these gatherings give them a boost of needed energy, and of "me too" camaraderie that is irreplaceable. Diabetes well-being has improved, mental health has been salvaged and some have shared that lives have been saved by the friendships made during UnConferences.
My own heart and mind needed this bolus of peer support recently too, as I've been experiencing recurring diabetes burnout and even have been questioning whether it's time to move on to a less visible way of wearing diabetes on my sleeve. The UnConference in Alexandria quashed some of my concerns and proved (once again) why this is all so important. The people in the room were grateful and energized. And yes, we missed many friends who couldn't make it despite so much wanting to be there.
Here's to looking forward the return of the Diabetes UnConference in 2019. And in the meantime... here's to continuing that peer support in whatever ways humanly possible across our D-Community.