I don’t go to church, but I imagine that it feels a bit like how I felt at the HealtheVoices 2019 Conference a couple weeks ago. A deep sense of comfort and belonging. A common belief in a greater good for all. Friendships forged out of shared joys, traumas, and passions. A lot of singing and dancing. Tears of joy, of connection, of understanding. Sharing of resources. A feeling like everyone around you is family.
In the world of patient advocacy, an event like this — sponsored by industry organizations, but designed by and for patient advocates — is rare.
The main organizer is Janssen Pharmaceutical Companies, an arm of Johnson & Johnson, and they bring in a handful of big sponsors as well. They have a strong patient advisory board that helps create the programming for the event, and they cover travel expenses for every patient who attends — 140 of us this year. It’s a massive undertaking and it was friggin’ awesome. The open mic night alone was worth all the spoons I spent that weekend. (Stand-up comedy about ostomies! A drag queen performing You Got To Show Me Love! Original poetry and spoken word performances!)
Being a patient advocate can be kind of lonely at times. I’m sure that sounds odd to you; after all, I’m constantly speaking with people, connecting on social media, speaking at events… I do have a strong sense of community. But when you live with chronic health stuff, and you advocate for others, your own health concerns often get brushed aside.
I have had people write me angry letters, demanding I film more YouTube videos because they depend on me. (I paused filming new videos last year while I dealt with a massive months-long flare-up.) I’ve had event organizers expect me to travel and work for free for the “exposure,” and when I explain that “exposure” doesn’t pay the bills, they seem stumped. (And then I feel sad that I can’t go to the event.)
While I’m sure you, dear reader, are not this type of person, there are lots of folks in our community who are demanding and unreasonable, and expect us patient advocates to do all of our work out of the goodness of our hearts. But that’s just dang impossible. And the folks who organize HealtheVoices get it. Not only do they make sure we travel comfortably and that all our needs are handled for the days we’re there, they also provided a room for resting, heating pads, blankets, and an on-call EMT for emergencies. Being able to take care of myself at the event meant I had more energy to learn, and make new friends.
Friends like Lauren Reimer-Ethridge, who has chronic intestinal pseudo-obstruction. I’ve known her online for a while now, but we got to meet! In person! And talk about our work! And compare fashion for sick chicks! (She’s my new style icon.)
Throughout the weekend, I met all kinds of folks, representing at least 60 different chronic illnesses. I met straight and gay and trans and non-binary folks. Black and brown and white and asian folks. Young people and old people and middle-aged people. Skinny people and fat people and in-between people. City folk and country folk. All kinds of people, y’all. And we talked about the challenges of this work, and running our own businesses, and maintaining strong relationships, and raising kids, and advocating for our own needs, and… it was powerful. I felt seen. I felt like my concerns were represented, taken seriously, and lifted up.
And did I mention the laughing? I couldn’t stop laughing all weekend.
These moments matter. They’re what fuel me. When I’m exhausted and scared and unsure of my next move, the friends I met through HealtheVoices are there for me. When I’m trying to come up with the next big thing for ChronicBabe, the lessons I learned at the conference will help me. And being represented? Being heard and respected? It’s everything.
If you’re considering doing advocacy work, check out the conference and apply to attend next year’s event. If you’re looking for community, seek it out in Facebook groups and online forums. If you’re feeling alone with your illness, you’re not — there are people out there who will understand and respect you. Reach out to advocacy organizations for your illness(es) and ask how you can get involved and find more support.
And again, thanks to everyone who made HealtheVoices happen. I can’t wait to attend again next year!