“Listen” wasn’t the theme of the 2018 #HealtheVoices conference. It was actually Stronger Together.
The #StrongerTogether theme was reflected throughout the entire conference, as empowered patient advocates and industry experts came together for valuable sessions on things like podcasting, caregiving, photography, social media, and so much more. Attendees informally got together to host impromptu Facebook live sessions, Twitter chats, and even in-person meetups. Nearly everyone brought their skills to share, enough for the whole class. Collaborate, learn, and become Stronger Together, we did.
That same theme was reflected as attendees shared their own disease stories and experiences within their own condition communities. Being diagnosed with one condition made individuals stronger for when a second diagnosis came along. It has made people stronger when chronic conditions turn, and now the patient is the caregiver. Every single person in attendance has grown stronger because of the things life has handed them, and then, because of the communities they’ve built around them.
An empowered patient advocate community is unapologetic. Patients and attendees here don’t have time to worry about clapping politely when there is change to be initiated. They aren’t afraid to use their strong, collective voices to let the world know that something has got to change, to improve. It’s a community full of people who have learned to tell it like it is, who have built up sometimes really, REALLY tough skins and voices and have taken on the fights that we all need. The fights for awareness, for treatment, for rights, for support, for understanding. The fights for information, for resources, for voices, for real change and improvement.
We are stronger together as we’re connected as one, from many walks of life. It was humbling to hear Karen Duffy of MTV and Dumb & Dumber fame to take off her mask and tell us all about her life with neurosarcoidosis in a keynote speech filled with humor and grace. But what was even more humbling was to have her attend the entire conference. She was one of us. She is one of us. Chronic disease doesn’t discriminate, it doesn’t matter if you’ve interviewed rockstars or your career is crunching numbers. If you’re a student, or retired, or unable to work. If you’re rich or poor or any race or orientation or religion.
But this is also a community of empathy. Our hearts are strong. We take on the pain of the others we’ve met at this conference and beyond, even on top of our own pain. It’s an instant family full of selflessness and care and uplifting. As Mike Durbin of My Diabetic Heart reminded us with wristbands, A Little Heart Can Do Big Things. It’s truly a community of the best kinds of role models. These are the people we want fighting on our side. Their fight is strong, their hearts, even stronger.
We are strong in our humility and our gratefulness. And we are quietly strong. We listen.
So many great things occurred at the 2018 conference. But a lot of subtle things happened too, and this is one that we noticed the most. There is an incredible, irreplaceable sense of openness and safe space that fuels the entire weekend and community. Attendees put their hearts out there during Open Mic Night, including Gabriel Nathan sharing a peek into his world with depression and Herbie the Love Bug, and Jesus singing, powerfully, what we are all doing. Surviving Still.
But even moreso, the individual conversations, introductions, and shared stories had a powerful undertone of openness. And this is one of our favorite things about the group that HealtheVoices brings together. We are all there because we’ve been handed something we didn’t ask for, never could have imagined, and unending. We’ve all let it change us for the better, in some regard, or at least, we’re still working on this. We’re all people that have put our most personal things into a more public space, in order to help those out there who may need it more. We’ve all found our voice regarding chronic disease, we’ve learned how we want to talk about it, how we want to be asked about it. We know how to guide our own narratives, and because of this, we know how to ask others to share their painful stories, to let them open up with trust and respect.
It’s incredibly powerful to meet someone for the first time, to ask, “What’s your name and what’s your condition?” without being judgemental or responding with pity. It’s amazing to be able to talk openly, with just about any other person there, about pain and death and the forever-ness of what we all live with. If the whole world learned to communicate in this way, what a world we would have. But listen, we are doing this. We are the ones that can change the whole world.
The one and only Daniel Garza of the Put It Together Podcast, among so many other things, summed up exactly, we mean EXACTLY why we are all there, what we all have in common, and ultimately, what makes us Stronger Together.
“We all have this fire. We’ve been in quick sand & high tides & made it to the end. Despite the doubts…after everything we don’t want other people to go through it. We’re the coat we put on the puddle so people don’t get their feet wet. We don’t care if we get dirty again.” WOW
— Natalie Hayden (@nataliesparacio) April 29, 2018
Disclaimer: Travel expenses were paid by Janssen Global Services LLC. All thoughts and opinions are our own. Thanks to Janssen, as well as 2018 sponsors Everyday Health, Google, YouTube, HealthCentral, Healthline, WebMD, WEGO Health, Wisdo, and Twitter. We recognize that companies have a lot of choices as to what to do with their valuable resources, and putting it behind empowering patient communities and patient voices means a lot.