HealtheVoices 5: A Little Heart Can Do Big Things
We were honored to have attended the #HealtheVoices19 conference: A Little Heart Can Do Big Things. At some point (or probably many points, the conference was a blur!) I was asked, as a first year advisor, how HealtheVoices has changed since its inception. It took me a while to figure out how to respond to this, because honestly, there are so many things, and growth like this takes time to absorb.
The first year was like a good first date. We knew there was potential, we had an idea of what we wanted, but we just needed to figure out how to build up. Year two saw some growth and familiarity come into play. By year three, we had found our groove, and from there, a really, really good thing just became greater and greater.
The faces that have experienced, and contributed to, HealtheVoices over the years have brought in some different perspectives, and represented a range of conditions. More and more rare diseases have contributed their voice, sometimes by making a huge splash on their own, and sometimes as patients with more well-known diseases collect additional diagnoses. And while virtually all of us are affected by the mental effects, those with diagnoses such as Bipolar and Schizophrenia have shown us that they deserve the same platform as what’s considered physical diseases – and that we all experience a common experience of stigma, anxiety, and challenge.
First Date to LTR
The 2019 conference has grown with the addition of Johnson & Johnson Medical Devices as a co-sponsor. Because of this, the conference grew in number of accepted attendees, half of which were new. On night one, the first time attendees were excited, but visibly nervous, as veterans shared what was almost an inside joke – we knew, by the end, we’d all be family. No question. None. In fact, after a mini-summit, Amber Wallace of OstomyDiaries and I were asked ‘how long have you been friends’ to which we replied ‘exactly 4 hours’.
New and old attendees, across over 60 represented conditions, connected in a way I’ve only seen here. In the most open, safe, and empowering environment possible – and I still find myself pondering just how this amazingness came to be (fine. we all know it’s Mama Becky and Queen Caroline). The event, and community has become a rock, a powerhouse, a game changer.
It’s an instant support system and instant family, as many advocates meet not just their fellow online advocates, but sometimes, just other patients, for the first time. As we mentioned last year, it’s an incredibly special place to be. Not only is this a collection of patients, it’s patients that did something about their condition. Patients that incited change, and changed the conversation. It’s patients that have experienced stigma, isolation, and mental effects so profoundly, that they couldn’t possibly sit by and let it happen to others. And because we’ve learned to craft this dialogue, we understand deeply how to carry it to others, whether we’re asking, or being asked, about our condition(s) by strangers.
As Kimberly of Autonomic RN stated so perfectly:
“People were asking about my conditions because they wanted to learn, not because they felt obligated. Everyone asked each other how they felt and nobody expected the standard, “I’m fine” answer.”
This happened repeatedly as 140 advocates met, talked, and cried with the kind of openness and empathy that can truly change hearts. And as it was, the theme of the 2019 HealtheVoices was Mike Durbin’s mantra, “A Little Heart can do Big Things”.
But now that I’m home, I think I’ve figured out just what I’ve realized on HealtheVoices’ fifth birthday. What exactly has changed and grown.
In the beginning, we were a bunch of advocates that felt like maybe we had something special. So we brought in experts to teach us. We learned from organizational story tellers, legal experts, and career social media managers. We got some good questions answered and took that back to our platforms and our communities.
From there, we quickly realized, we are the experts.
We are the experts.
Every year, patient advocates have taken the stage more and more. From leading impactful panels to small group discussions, to hosting live podcasts, to bringing their outside or career expertise, there is such an immense amount of talent that’s inherently present in our HealtheVoices community. If you want to learn how to dominate at podcasting, or get signed with a publisher, or light up a room with a drag performance, you’ll get it. We aren’t just patients, and we aren’t even just advocates. We’re a group of people that have found an immense talent and power in what and how we evoke change. It’s about more than disease, it’s about more than learning to live with a chronic condition. It’s life. It’s all of life.
I’ve never been in a place before where ‘that person is the most amazing person I’ve ever met’ comes out of my mouth repeatedly. But it’s not wrong. Never have I seen a group of powerful people, people enacting change, but not just that – people that lift each other up, share skills, and collaborate.
In all of advocacy, the importance of having other patients to connect with has come to the top of the conversation. Both research and anecdotal evidence show that patients find a trust and perspective in other patients, that they don’t find anywhere else. Not even from their doctors. The voice we provide is essential to the modern patient experience. Doing what we do is changing lives, and doing it well is essential. To find others who share our patient perspective and experience, and who are using their talents to advance this really leaves me with no words.
And on top of that, it creates an incredibly diverse community. It shows, loudly, that chronic disease doesn’t discriminate. It doesn’t care if you’re the head of your company, or a preacher, or a published author. It doesn’t care if you’re a medical professional or a teacher or a waiter. It hits you and it doesn’t care, but at HealtheVoices and throughout the rest of our year, we hit back. And we take the skills and talents we’ve acquired from being a nurse, or an actor, or a chef, and using them to fuel the work we do, and advance the conversation. Chronic illness thinks it got us, but what it’s really done is created a single place for some experts, some powerful experts, to come together and improve things for each other and our communities. We are the experts in so many ways.
My, How We’ve Grown
On our first date in 2015, HealtheVoices was born, with the mission and theme of Empowering Online Advocates. And in that meeting, we learned about the differences in our disease, but found that we were more the same than different. So in 2016, we recognized the Deeply Rooted Connections that brought us together as one community. These deep roots intertwined and supported us, lifted us all up as individual voices, and as one single power. In 2017, we proclaimed Together We Thrive, as we found our immense strength and life that was present in us all. We’ve sparked a real change in not just ourselves, not just other patients, but healthcare as a whole. And we realized that this strength multiplied as we collaborated with other patients, created new platforms and messages, and swapped professional skills, so in 2018, we were Growing Stronger Together.
And in 2019, because of the mantra of Mike Durbin and a spark by Molly Schreiber, A Little Heart Can Do Big Things became the theme. But it’s more than just a tagline, as so many of us realized and discussed throughout the conference. The power in HealtheVoices is palpable. I mean, it’s really truly there, and it’s humbling. It’s not often you can walk into a room and realize that the world is not the same because of a bunch of humans who are, indeed, doing big things.
Happy fifth birthday, HealtheVoices.
With a special thanks to the Janssen, J&J, and Evoke teams who made this all possible, especially Caroline and Becky, who sometimes think they are just doing their jobs, but are really providing the lifeblood to pump all of our little hearts, and providing the platform and community to do big things. The world is better because of you.