I applied, but didn't expect to go.
HealtheVoices is a very different sort of conference to any of the others I’ve been to. It’s a conference of online patient health advocates, 105 of them this time, representing different chronic health conditions, HIV being just one.
I was already aware of the conference due to PositiveLite.com’s Wayne Bristow and Bob Leahy having attended last year. They’d both had nothing but good to say about the experience and so, thinking, “Why the heck not?” I applied, not really thinking I’d be invited. After all, I’m still fairly new to blogging. Nobody was more surprised than I was when the invitation came.
As I looked over the attendees’ list and as the agenda was finalized, I was thrilled to see that this conference offered not only the chance to meet, network and learn from some of the very best in the blogosphere, but also featured many presentations directly aimed at the needs of the online advocate.
From emotional self-care to online self-protection, there were presentations on it here, as well as on topics like, “Creating Credible, Strong Content – How to Interpret and Share Scientific Data With Your Audiences,” and introductions to the functionality of You Tube and the Facebook family of apps. A goldmine of knowledge; a treasure trove of individual and collective experience to learn from!
So I was thrilled. But yikes! I needed a passport quick and yikes! What would I find in Donald Trump’s America? The passport in fact turned out to be much easier to get than last time I applied (back in the seventies) – I had it in plenty of time, so no worries there. And I tried to ignore the border crossing horror tales I would occasionally encounter as the big day drew nearer.
And then the big day was here and I was up early, early, on my way to Chicago, where Janssen had brought together 105 online patient advocates, 105 beautiful activist souls, for a summit under the banner, #HealtheVoices17 – Together We Thrive.
(Disclosure: Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.)
I got into Chicago early in the day. People were checking in all day long, coming from all over the place and this was the first chance I got to actually meet many of the HIV advocates I’d only met online. What a pleasure! I felt immediately that I was among kindred souls.
I went out and explored a bit around the hotel but the weather really wasn’t too inviting. It was more appealing to go back to the warm, dry hotel and hang out with friends for a while before bed. On the 20th, we would kick things of with #purposefulconnections, a summit conference of online HIV advocates.
Chicago, April 20 #Purposeful Connections – Had a great day. Purposeful Connections was a summit of online HIV advocates held the day before #HealtheVoices17 was to commence. There are a lot of HIV advocates here and Rhonda Waters of the Janssen & Janssen Human Performance Institute facilitated as we spent the morning introducing ourselves, telling our stories and basically explaining where we’re coming from, in our advocacy and in our lives. This was intense. There were tears, there was laughter. There was reality.
This was followed by a presentation by Rhonda on how to maintain energy, purpose and resilience in the face of the multiple obstacles and dispiriting circumstances we all run into during the course of our advocacy. Rhonda is a gifted speaker. I was struck by the image of our group of advocates as like redwoods in a forest; apparently separate but in fact feeding and supporting one another at the roots, where they are connected.
Online advocacy can be a very lonely place at times, so I found this especially poignant.
We heard that energy as we know it exists in four dimensions: spiritual, mental, emotional and physical and that energy expended must be replaced. Self care, anyone? It’s vital. And it turns out that self care might mean cutting back some of the relationships that drain our energy without giving anything back, or even worse, are actually toxic.
Next we had workshops on “Reigniting Your Mission” and “Powering Up the Community,” where we were asked to use processes of elimination (discarding our values beyond our level of comfort) and process of visualization to redefine our core values and mission. Then we were to write out our newly redefined mission statements.
It was a great day and I came away feeling invigorated and even more connected with the others
Once we’d finished, I dashed out to do some of the sightseeing I wanted to do yesterday but didn’t, because of the weather.
Chicago, April 21 #HealtheVoices2017 – Yesterday’s Purposeful Connections summit was for the HIV advocates but today #HealtheVoices17 conference proper kicked off, with 105 attendees who advocate for a host of ailments.
Today’s presentations were mostly, once again, about how to maintain wellbeing of self in the face of the many slings and arrows advocacy tends to send our way. Rhonda Waters of the Janssen & Janssen Human Performance Institute presented first, covering off many of the same points as yesterday, but for everyone this time, not only the HIV advocates.
Since many in the room had never met before and didn’t know much about one another’s areas of advocacy, we played some “getting to know you” games, partly to introduce ourselves to one another and also to establish some commonality of purpose. I spent some time explaining to anyone who’d listen that HIV intersects with all of their areas, especially with nearly half of our population at or nearing the age of 50.
Even without factoring in HIV, people in the last five years of their lives spend on average more time in medical care than in the entire rest of their lives. People living with HIV are at increased risk of practically everything, so it would be kind of lame for us all to stay in our silos, especially at this stage of the HIV epidemic.
Another of the day’s highlights was a panel discussion of the stigma all advocates encounter and how to deal with it. This was illuminating for me, as I really hadn’t much awareness prior to this of what stigma someone advocating for, say, Crohn’s disease or psoriasis might encounter.
Later, Dr. Sarah Taft gave a presentation on Caregiver Stress Syndrome and emotional and psychological self care – how to achieve the best results for our communities while keeping ourselves focused and healthy.
It turns out to be pretty important to monitor our self-talk, to remember to relax and take time for oneself and also to set limits with people. Energy expended must be replaced. She also gave us a couple of nice relaxation exercises to do when we feel the need.
In the evening, there was Open Mike night -- people could come up and do whatever they wanted and the performances ranged from hilarious to tear-inducing. Great stuff, but unfortunately my pictures of it didn't turn out due to the light, so use your imagination.
Chicago, April 22 #HealtheVoices17 – The social media “how-to” presentations began today. We started this truly gorgeous Saturday morning with a presentation by George Alafoginis of Facebook, on the Facebook family of apps. I am someone who avoided social media for years, until HIV struck and I became an advocate. Since then, what I’ve learned about it, I learned on the fly – enough to do what I needed to do at the time, but not much more, so this was great for me.
George went through how Facebook is organized and how each of the apps work – there are a lot of tools available there for me to use and I hadn't been aware of them prior to this, or else just hadn't understood much about them and I was glad of the chance to learn.
My first breakout session of the day was entitled, “How To Be An Effective Policy Advocate” and while it was very much oriented to United States politics, there were still tips to be learned which would be helpful anywhere.
The next presentation was called “Making the Most of a Medical Meeting” and this too, while oriented towards the U. S., still offered ways of researching medical data which were at least somewhat pertinent to life as I know it.
Next up was “How to Grow Your Audience Smartly and Successfully.” It had some good tips, mostly about working out one’s objectives, who we’re trying to reach and why, etc. as well as tips about methods of using certain apps.
But for me, the meatiest presentation (other than supper) was this: “Creating Credible, Strong Content -- How to Interpret and Share Scientific Data With Your Audience.” The title pretty much says it and of the presentations I’ve seen and heard here, I think this one had the info that will be the most useful to me in my work at PositiveLite.com, particularly the information on ways of checking back on the validity of studies. Kudos to the presenters, Arefa Kassoobhoy and Heather Gabel for making the whole thing so clear and on-point.
Last presentation of the day was all about using YouTube and as with the Facebook presentation, what I was struck by was the number of tools available in the app that I either hadn’t been aware of or hadn’t quite understood before.
So that was my work day. Next I had time to freshen up and then all 105 of us went out for group photos (taken from overhead by drone) and then to supper at Wildfire together, which was great fun. Supper was wonderful. My favorite was the bison meat balls. Best ever. And the company was excellent.
As I’d been doing throughout the conference with anyone who’d listen to me, I regaled the rest of the table with HIV information which they hadn’t been aware of, including #UequalsU. I don’t think they minded too much. At least I hope not.
Hey, that’s advocacy.
Chicago, April 23 #HealtheVoices17 – This was the last day, the day we’d all be heading back to wherever in the world we came from – some are here from as far as Australia and Taiwan.
I made a point of getting up and out early in order to see the Bean. The Bean is a huge sculpture; it sits there looking like a huge bean made of mercury and if you walk underneath, it’s concave overhead. It’s actually called “Cloud Gate”, but everybody seems to call it “The Bean” and everyone had been telling me that I had to go see it while in Chicago, so this was my last chance. Glad I took it too. It’s the fun house mirror effect maximized. The photo ops to be had here are limitless.
After a very leisurely breakfast, the morning started off with exhibitions by community partners and also summaries in graphic form of all the breakout sessions were displayed.
This was followed by a panel discussion of online self protection – ways to avoid being stalked, harassed, having your privacy invaded, identity stolen, etc. During the Q&A, several of the attendees had horror stories of their own to relate and this has given me much food for thought. I may start to do certain things a bit differently in the not-too-distant future.
Next, Janssen announced the creation of a fund to which advocates may apply for grants of $5000 to fund, not their online advocacy, but projects arising from their online advocacy. No, Canadians aren’t eligible but I was still delighted with the news because as I looked about me I could see that every single one of these champions has a “next level” they want to bring it to.
And then, a few brief goodbyes and it was time for me to go.
To the other attendees, our hosts at Janssen and the team at Tonic, my thanks. The people at Janssen and Tonic did so much to make the entire conference a first-rate learning opportunity and a pleasure throughout.
I feel grateful and privileged to have had the time together to share with you and learn from you. I gained fresh knowledge and insight from you all, my friends and a strengthened sense of common cause with you all. I feel my purpose rekindled.
So remember how the redwoods interconnect. And let’s keep on winning.