Thursday, April 21, 2016

But We All Look So Healthy

I’d always wondered how quickly I could insert my foot into my mouth. Generally it takes a few minutes into a conversation, but I exceeded even my own expectations when I tasted the soles of my shoes ten seconds into HealtheVoices 2016, establishing a new personal record (and you thought PRs were only for athletic achievements!).

When I was invited, all expenses paid, to attend and participate in HealtheVoices 2016 in Chicago, “a first-of-its-kind, weekend-long conference that brings together online advocates from across various health conditions,” I immediately wondered, um, why. The event was sponsored by Janssen Pharmaceuticals (along with Everyday Health), which currently only dabbles in multiple sclerosis research--there was nothing concrete in the pipeline for my disease. And the premise of the conference sounded sketchy--“to provide valuable content, such as tips to further engage and grow an audience; thought-provoking conversation; and networking opportunities for online health advocates”--triggering my pharma-dar to go off. Lots of giving, not much taking. Suspicious. What was the catch? So I asked. The vice president. 10 seconds into the conference. Oh, Dave.

Okay, a few disclaimers: a) I did not know that Linda Fedow was the VP (aka, the “boss-boss” according to others at Janssen) when I half-jokingly said I didn’t want to speak to a Janssen rep (after all I was excited to meet the other 90+ patient advocates, all of whom I had diligently researched beforehand), b) after I discovered she was the boss-boss, I immediately quizzed her on the wisdom of my presence, and c) yes, I did tell her I should be next years’ keynote speaker… before discovering the two speakers for this event were Jamie Heywood, co-founder of www.PatientsLikeMe.com, and Kevin Pho, the doc behind www.KevinMD.com. Oh, Dave.

I was surrounded by social media rock stars in patient health advocacy… 300K Twitter followers, 100K Facebook likes, a zillion subscribers on YouTube were not uncommon. On the MS front, I finally got to meet the one and only Trevis Gleason (http://trevislgleason.com/) who blogs for Everyday Health. We both started blogging 10 years ago (ActiveMSers launched just a couple weeks before Trevis’ blog), making the two of us arguably the longest tenured MS bloggers on the planet. Longtime buds Lisa Emrich (Carnival of MS Bloggers), Lisa Dasis (MS Lisa Says), and David Lyons (MSFitness Challenge) rounded out the MS contingency, although another blogger—a breast cancer survivor—had been recently diagnosed with multiple sclerosis. Ann Marie probably wasn't rah-rah thrilled about joining our team, but she's an awesome fighter and has that kind of attitude all of us with challenges need to channel.

It’s hard to point to one highlight. The educational breakout sessions were fantastic and chock-full of sage advice, tips, and industry tricks. Speakers confirmed what I suspected--that I’m not doing enough video, I need to pay more attention to analytics, and I need to post more regularly. I also learned that I’m doing a lot of things right already--following the rules of the blogging road legally, connecting with you all across multiple platforms (did you know I just started an Instagram account?), and being authentic, honest, and true. The keynote speakers were engaging and practiced (albeit slightly removed from the patient perspective), the networking opportunities were bountiful, and the entire event team was beyond helpful and courteous to a fault.

Best of all, I made a bunch of new besties, far too many to list. Britt at The Hurt Blogger, Marisa at Lupus Chick, Ryan at Crohn’s Guy, Jaime at Pretty Rotten Guts, Josh at I’m Still Josh, Julie at It’sJust a Bad Day, and on and on. It was inspiring and empowering to share the same oxygen as nearly 100 luminaries from the health advocacy world. And the crazy thing: everyone was fantastically upbeat, optimistic, and hopeful, even though virtually all of us were burdened with a serious condition (often multiple conditions), most of them entirely invisible to the uneducated. Heck, we all looked sooo healthy to outsiders! (In fact, I was one of the only visibly disabled attendees, and the only one using a wheelchair.) If they only knew….

And one day they will. As our collective patient voices continue to get louder, thanks in part to events like these, more and more people will know and comprehend (at least a little) the struggles of those facing chronic health problems and the importance of finding better treatments and, ultimately, cures. But more importantly, our voices will continue to spread, reaching those most in need of hearing of them—those who share our conditions and need support, education, and the reassurance that life goes on. No matter what the heavens throw at us.

Hope to see everyone for HeatheVoices 2017… even if I’m not your keynote speaker, Linda.

7 comments:

My Odd Sock said...

David David David. Inserted foot in mouth so often you now have athlete's tongue.
I would have been just as skeptical--but sounds like it was a great experience. (Though next year they'll beef up security and you won't be allowed in!)
Thank you for sharing the details.

Dave Bexfield said...

MOS, at least I made an impression. Even the event photographer pulled me aside and asked if I was always chipper and so much of a ham. I had to admit, yes. And then for the next half hour all I could think about was ham. And bacon. Mmm, bacon.

Marisa Zeppieri Caruana- LupusChick said...

It was so great to meet you! Wish we could have spent more time together XOXO Next year! We can mortify ourselves even more by saying inappropriate things at the worst times, lol. (I do this often, unfortunately).

Dave Bexfield said...

Marisa, it was totally awesome that our paths crossed. But crazy thing: it turns out they originally crossed a couple of years ago, along with Josh! Just stumbled on this again: http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#3

Laura k said...

Wow, Dave. You have had a time of it lately. The HealthEVoices conference sounds fantastic, especially getting to meet Kevin Pho. And spending time with a great group of MS Bloggers. I trust you represented those of us who can't/won't keep quiet, well during the weekend. I would have had some questions for one of the presenters about their transparency and use of patient data as a commercial goldmine. Or at least asked if they could put that information on their web site in a font larger than 4 pt. At least you ask questions with that boyish charm and a smile on your face. Keep healing....

Kelly Williamson said...

Great read, Dave. I'm sorry you had to taste the sole of your shoe, but hey, I love your honesty! As you said, being YOU is one of the many things that make this space and what you've built with ActiveMSers what it is. :) I also checked out your friends' sites too... take care and keep the rubber side down amigo. ~kelly

Dave Bexfield said...

Keep the rubber side down. Good advice, Kelly! And yes, Laura K, I had the same Qs for that one presenter, too, but as a newbie and having already munched rubber, I laid low (for me).