Getting all my disclosures out of the way first: I am on the advisory board for this conference and also presented as a speaker. My travel, lodging, and expenses for the conference were covered by Janssen, and I was compensated for my participation and my consultation. My opinions on the process and the conference are mine, but admittedly influenced. Bias lens in place! Moving on.
Two weekends ago, I was in Jersey City for the first (of what I’m hoping will become an annual event) HealtheVoices conference, put on by Janssen. The formal tagline description of the conference was “HealtheVoices Conference: Empowering Online Advocates” but in my head it was “HealtheVoices: Finally, A Bunch of Us In One Room.”
Most of my advocacy work takes place in the diabetes space, talking with people already familiar with diabetes. Or folks newly introduced to diabetes. Or working in diabetes. However you slice it, the majority of the people I come into contact with in an advocacy sense are touched by diabetes somehow.
But diabetes is only one “patient space” on the Internet. There are patient communities everywhere, spanning a slate of conditions. Cancer, Crohn’s disease, Rheumatoid arthritis, mental health, HIV/AIDS, lupus, multiple sclerosis … these conditions are just a small cross-section of the topics covered online. People come together through common needs and experiences, and dealing with health-related issues creates a melting pot of discussions and camaraderie.
the attendees – all photos courtesy of the Janssen photographer
I was really excited to be part of this conference because it helped me pop that diabetes bubble, bringing me outside of my comfort zone of personal experience and immersing me into a diversity of experiences. I could not have been more grateful for the opportunity, because it was inspiring and humbling all at once.
“I know I have something in common with all of you,” I shared during the presentation on compassion fatigue (a discussion about managing personal health needs and the growing needs of a growing health community) “But I don’t know the specifics of it yet. I know what my peers with type 1 diabetes are dealing with, but I am still learning so much about other health conditions. There’s so much I’m learning about what it takes for each individual here to have a ‘good day.'”
And I loved learning. Seriously, there were some amazing people in attendance. Here are few blog recaps from folks who attended, and other viewpoints can be grabbed from the #healthevoices15 Twitter discussion:
- Patient Health Bloggers Gather at HealtheVoices 15
- HealtheVoices 15: Our Voices Are the Same – Dina had some of my favorite quotes about the conference, including “I learned that although we have different diseases or health conditions and are from different online communities, that we are in fact the same. At the naked core – our struggles are the same, our triumphs are the same, and our hopes and dreams are the same.”
- But I Don’t Look Sick. We All Don’t Look Sick!
- HealtheVoices 2015: Peeking Into Other Patient Communities
- You Can’t Judge a Book By Its Cover
- HealtheVoices 2015: We Are Not Alone
me, Karen, Kim, and Jenni
I don’t know all the proper language and subtleties and nuances that are necessary to speak eloquently and respectfully about the health experiences of others, but I did feel that strong, unspoken, powerful thread of “me, too” running through this conference. We don’t deal with “the same” but we are all in pursuit of a life worth living, despite or because of whatever health challenges are in our lives.
the healthevoices patient advisory panel
Personally, I loved the diluted focus, stepping away from personal blood sugar checks and the beeping of pumps to see the patient community from 10,000 feet and the diabetes trenches, simultaneously. It wasn’t about a specific health condition, but about the human condition, (and as cheesy as that turn of phrase might be, I’m sticking with it because there’s been a surplus of coffee today). There was a high level of respect, community, and inspiration that left me needing a few days to process, and a lifetime to act upon. People with diabetes have a great and empowered community to draw from, and outside of the diabetes community is a bigger, broader, more diverse community of patient advocates who are aiming to change the world, moment by moment and breath by breath. Together, we are powerful.
To that, I give a solid “hell yeah.”