Last week I had the pleasure to be invited by Janssen to participate in their HealtheVoices Conference 2015. I spent three days with 65 other patients and advocates of a variety of diseases like Diabetes, AIDS, MS, Cancer and many others. I also had the amazing blessing of being able to finally connecting face to face with my fellow online Inflammatory Bowel Disease advocates. No, I have never met these people in real life (except for Ryan, who I met at the DDNC this past year), and yet they are some of the first people I will go to with an issue I am having both IBD & non-IBD related. These people are just as much my friends and family as the people I’ve known for ages. To be able to sit with someone with a J-Pouch, who has children around the same age as Hippo and realize that my life is actually quite normal.
As much as the conference was about fellowship, it was also about learning about how to better serve our communities as advocates. The conference provided resources and tools in the way of recognizing our own Compassion Fatigue, expanding our reach and finding a way to really use our platform to the best of our ability. What an amazing thing Janssen did, truly. I say that as a patient and an advocate. It was truly amazing to be in a room with about 65 of some of the strongest people I know.
It’s an interesting thing being an advocate for a deadly disease while you are battling a deadly disease. Interesting because you are exceptionally passionate about sharing information, providing a beacon of hope for other patients and just providing a sense of normalcy. But the problem is that I am just as sick as a lot of my readers. Often I find myself stressed out at the fact that I am not always posting, which will make me sicker, because stress induces an autoimmune flare up. I stress because I feel a sense of duty to help someone who may be worse off than me. Most people believe that blogging is more of a narcissistic form of therapy where we sit around, complain & overshare life as a mother, patient or whatever. But as a patient advocate and as a mother, I actually am providing a service to my community. Providing a cyber hug & helping hand by sharing my resources and information. And I know that there are people who depend on some of my information, that it’s more than just a good read. I think that sometimes it makes me forget that I too, am sick. That I need to take a moment for myself. And that it is okay. I learned just how okay it is, at this conference. I realized that if I don’t take that time, I am no good to anyone. That goes for blogging and for motherhood. I have to put my oxygen mask on first so that I am able to help put on someone else’s.
I cannot wait for the next conference with Janssen. I appreciate the fact they are recognizing the personal relationships bloggers have created with their readers, who are the consumers/patients. I look forward to attending next year. I promise to take more pics and tweet more from the conference so you can enjoy our fellowship as well. Shout out to my IBD family Kelly, Amber Tresca, Ryan, Amber, Sara, Dan, Frank & Marisa. And to my new friends, Ben, Brittany, Aimee, Karen, Kerri, Kevin & Brian.
*Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.”