We are survivors of a chronic disease or caregivers, moms, dads, sisters or brothers affected by it. We are 100 activists with a huge connection - we are online health writers and bloggers. Many of us have never met. But thanks to the recent HealtheVoices conference in Chicago earlier this month we are connected.
Now, I’ve been to plenty of workshops, seminars, and conferences over the past five years, full of powerpoint presentations, professional speakers and very busy agendas full of research and statistics. HealtheVoices was not that type of conference and it didn’t take long for me to see why I belonged there. It validated the work I do online; I had been noticed.
It all began on February 10th when this online message popped up from a longtime contact, Kevin Maloney from Rise Up To HIV:
I clicked the link Kevin had sent with the message. As I read the comments and watched the video testimonies from the first conference, I could see it was a perfect fit for me.
I had to get busy and start planning to go, even though it was still just a possibility. I didn’t have a passport yet; I’ve only flown once before and it was within Canada. The application process for my passport became a challenge but I had my passport in hand just days before leaving for the conference.
(I need to add this. Travel expenses for all HealtheVoices conference attendees were paid for by Janssen Global Services, LLC. All thoughts and opinions expressed by advocates are fully their own, and are not reflective of those held by Janssen.)
If you were to go back to ten years ago my contribution to advocacy work would have been behind a desk stuffing envelopes. Today it’s at the computer. Social media is the vehicle and for someone who isn’t very accomplished at public speaking, I am a champion online. And at HealtheVoices16, along with PositiveLite.com’s Bob Leahy, I met many genuine champions.
At the conference everyone had permission to use their voice, to tell their story. It was simple down-to-earth conversation. I felt a sense of family in the room. These people were so passionate in what they do and from that passion came much laughter - and tears, some happy tears and some very heartfelt tears. We listened and gave those participants our full attention and support.
Several of the workshops were facilitated by our peers, framed around their stories and challenges they had encountered getting to where they were. Through the discussions we were able to learn and share our suggestions on how to do things differently.
Back in the 1980s when the HIV epidemic was new, a group of men gathered in Denver Colorado and came up with what became the ‘Denver Principles’ that told everyone “nothing about us without us”. My fellow participants from other disease groups may not have known that they are voicing their rights much like in The Denver Principles but they are doing it very well. They had questions, they were demanding answers and they did it with bravery.
The highlight of the conference though was meeting some of the HIV advocates that I have been communicating with and sharing their material for the last four years. Thanks to Kevin Maloney, Aaron Laxton, Josh Robbins, Joshua Middleton, Benjamin Di Costa, Guy Anthony, Kamaria Laffrey, Brian Ledford, and Khafre K. Abif for being an inspiration. It was great to finally meet in person.
Since returning home from Chicago I find myself more aware of the people around me. Sitting on the local transit or having a coffee in a café, I look around me and wonder what the person across the room deals with in their life. Are they a fighter like me, do they need someone, do they have someone to share it with?
I watch to see if there might be some eye contact so that I can just give a smile or a nod their way. If someone is struggling, that might be one simple thing that could make their day. I have worked in healthcare and I’ve learned that it’s better to just sit and listen to someone, not to be judgmental and never offer advice or compare your story to theirs.
I've learned not all illnesses are visible and we really don’t know what it’s like to live with them unless we are affected by it.
My special thanks go out to:
All the advocates from across the U.S. Canada, Mexico and Australia. I wish you all the success in your work.
The Tonic Team: Stephanie, Jennifer, Emily, Rachel, Melissa, Kimberly, Emma, Deirdre, Katie and Brianna.
Janssen Event Team: Caroline, Daphne, Becky and Kaitlin and Teresa from Janssen Canada
Everyday Health Event Team: Amy
This was by far one of the best experiences I have ever been part of and you made it so pleasant. You all surpassed any expectations I had. Thank you.
Photos courtesy of Bob Leahy and HealtheVoices