Finding My Tribe
In 2012, I wrote my first blog about my journey with inflammatory bowel disease (IBD). There was no rhyme or reason to my post, I was simply telling my story. Over the next few weeks, my journey in blogging about IBD evolved into advocacy. I had found purpose in sharing information about my life with the disease and how I maneuvered through life with it. But I still felt alone. I still had not found anyone like me. For a year, I was living through the advocacy stratosphere unsure of my impact and whether or where everyone else was. It took a full year before I found my IBD tribe. It took another year after that before I found my advocacy tribe at the first annual HealtheVoices Advocacy Conference in 2014.
What is HealtheVoices?
The HealtheVoices conference is a seminar created by Caroline Pavis of, hosted by a variety of sponsors, such as WEGO Health and Everyday Health. It was inspired by thegrowing community of online advocates that have been instrumental in moving the needle on healthcare, research budgets, and global disease community recognition. The concept was to bring advocates together for a short time to give them tools and resources through a variety of sessions and community. It was meant to be a reinforcement of advocacy work that has already begun or give a potential advocate the base from which to begin. I don’t believe it was expected that the conference would blossom into the information-packed love fest that it is today.
Over the past four years, HealtheVoices has grown from only 60 advocates from approximately 10 disease communities to 120 advocates in over 40 disease communities. Because many of the advocates attending HealtheVoices are multi-condition representatives, there is a lot of representation and cross-promotion. The weekend has extended out to 3 full days of sessions, plus a few mini-summits for some communities. What makes this conference so special is that it is uniquely tailored to patient advocates. Often we live in a bubble where we put out a lot of love and support, but don’t receive anything back. While attending HealtheVoices, there are patient-friendly accommodations such as quiet rooms, ice packs, heating pads, comfortable chairs, food restriction-friendly options, and shorter walking distance between hotel rooms and the conference area. There are opportunities to socialize and network outside of your condition community. And then, of course, there are the sessions. Every year, there are great sessions that all have some sort of value and opportunity for personal growth within advocacy.
This year’s sessions were no different. A keynote opening speech from MTV VJ and Actress, Karen Duffy, about injecting humor into advocacy and life as a patient was the perfect jump start to a weekend where we needed to keep our hearts and minds open. Panels of bravery and diversity through your advocacy, advocating authentically across disease spaces, how to create great visuals to express your advocacy through imagery, how to start a podcast, how to utilize Twitter, and creating great content, were peppered through the weekend. Patient advocates left full of community and knowledge: empowered and ready to continue through another year of blogging, marching, and fighting.
What did I take away from the weekend?
I went into HealtheVoices the same way I do every year, with an open heart and mind, ready to receive as much as my brain can take. There was something I could appreciate in every session I attended. A way to reach others in a way I wasn’t aware I could. How to manipulate light to enhance my narrative and what I want to convey through images. How to become more authentic in using my voice and knowledge without sounding arrogant. I found resources from other advocates for some of my followers, that I did not have available to me. I stepped away with renewed friendships, new friendships, and a refreshed outlook on my own life as an advocate, patient, and mother. Looking forward to next year!