#HealtheVoices18

As you may have seen if you follow me on Facebook or Twitter, I spent last weekend at #HealtheVoices18, the yearly conference featuring amazing, passionate patient advocates living with nearly 40 different chronic conditions.
 
 
Full Disclosure: Janssen picked up the cost of travel and accommodations so I could attend HealtheVoices in Chicago. All opinions, including the ones expressed here, are entirely my own.
 
 
This was the fourth year of HealtheVoices. I was fortunate enough to attend the first edition back in 2015. I feel even more fortunate to have been a part of this year’s gathering.

The thing I really liked about HealtheVoices this year compared to three years ago is how much the patients are now a part of the program over the course of the entire weekend. In 2015, there were a few advocates sharing what they knew, and there were a few non-patients who shared what they thought you wanted to hear, but they always seemed to fall short of that somehow.

There was none of that this time around. From individuals sharing tips and tricks on Twitter engagement to some of the best patient podcasters around helping others get their own podcasts started, the weekend was really useful for me in a way that some other conferences are not.

Advocate attendees also shared their success stories surrounding specific initiatives they started after attending HealtheVoices, some after receiving grant funding from Janssen. More on that below.

There were the typical moments during meals and in the hallways where people also shared what they know, or shared their own experiences, and of course, those moments helped bond the advocates in ways that mere presentations cannot.

This was the first time I had experienced the HealtheVoices open mic night, where people who weren’t part of the original conference schedule could riff for a few minutes on whatever inspired them. I was not fantastic, so I won’t share my part… but I can tell you that Chelcie Rice killed it with his Sugar Free Comedy, and I’ll never look at the dessert selections on a buffet line the same way again. Also, in case you’re wondering, Rick Phillips is still pretty bitter about Walt Disney, and he had people rolling in the aisles as he described why Disney still owes him a vacation.

As you might imagine, the most moving moments came from people sharing their stories. I’m an empathy sponge anyway, and pretty much all of Saturday my heart was in my throat.

People shared about battling through depression and then dealing with workplace rejection as a result.

People shared about fighting their way through cancer and, as if that weren’t enough, getting an additional diagnosis on top of that.

I was reminded once again that those living with HIV and AIDS are among the strongest, fiercest, and kindest advocates anywhere.

People talked about laying in a hospital bed and wondering if they would ever be able to speak again or walk again or have anything normal in their lives again.

One of the advocates present shared that they had never been in a place where so many people had lived through so many moments where they nearly died, and how it proves that even though we may appear weak to others, our survival and perseverance shows that we’re far stronger than perhaps even we believe ourselves to be.

I’m not sure I can explain it any better than that.

Okay, back to the grant funding I mentioned earlier… Janssen, through the Community Foundation of New Jersey (where Janssen is headquartered), is providing 30,000 dollars in grant funding from the HealtheVoices Impact Fund to patient advocates who want to work on new initiatives that serve the people in their own health communities. To find out more and to apply for grant funding this year, go to
healthevoices.com/impact-fund
 
 
A few other tidbits:

– I wish I had spent more time with advocates outside of the diabetes space. I mean, I did do that, but not nearly enough. I feel like there’s a world of knowledge and camaraderie that has been left unexplored, and I get a sinking feeling in my stomach every time I think about it.

– That said, my time with others from the diabetes community was great. Time with friends I already knew like Bea Sparks, Chelcie Rice, Jenn Christensen, Corinna Cornejo, Mike Durbin, Karen Graffeo, Sue Rericha, and Molly Schreiber (who was part of this year’s HealtheVoices Advisory Panel). And time finally spent with people I’ve wanted to meet for some time, like Phylissa Deroze, also part of the Advisory Panel, and Rick Phillips. And Anna Norton, whom I almost forgot! Anna is one of the 2018 HealtheVoices Impact Fund advisors. The diabetes community is strong and left its footprint on this event.

– On a whim, I did some quick interviews during the conference with people like Bea, Chelcie, Jenn, Mike, Sue, and Lisa Deck, who is a stroke survivor and has an amazing story to tell. If I get a chance to be at HealtheVoices again, I’d love to do a lot more of this. You can find those interviews HERE, HERE, HERE, HERE, and HERE.

Care to find out more about the goings on at #HealtheVoices18? There’s a link that will take you inside every part of the conference, and you will find that HERE.

What did we all have in common? A lot. Body parts that don’t work like they should. Being treated as less than by some, many, or all parts of our global community. Having to work hard every day to turn lemons into lemonade. Or just better tasting lemons.

But the group at HealtheVoices also reinforced the fact that we’re all indomitable. We’re far stronger than the sum of what’s ailing us. We’re creative, we’re innovative. Empathy and resilience are our hallmarks. There is so much that each of us learns from each other.

And we’re teaching the world that our voices are worthy. And mighty.

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Comments

  • Rick Phillips  On May 1, 2018 at 9:34 pm

    Hey, darn right #DisneyOwesMeAVacation. Thank you for the shout out Stephen!

    Like

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