So much has changed since I started this blog, but what remains is my belief that this matters. My voice, your voice, researchers, physicians, caregivers – we all need to be part of this conversation. Our stories connect us, unite us, and bring us closer to understanding illness and how to live with it.
It seems appropriate that today, on the 8th “blogoversary” of Face Forward, I would stumble on an article that implied false information about the treatment and curability of lupus. It reminded me of why I want to be here, why I will continue to try and find a way to fit blogging and patient advocacy into my life. It’s hard to be consistent, to be here as much as I want to be, but I want to try. I want to keep myself in the conversation, to find other voices, to turn up the volume.
It’s not just about building awareness to support research towards finding a cure. It’s also about creating a community that goes beyond your specific illness. There is a common language and wisdom in our journeys that can inspire and empower. I am honoured that I’ve been approached by patient advocates of all kinds and I plan on continuing to share the work that they do.
My story here on Face Forward began when cancer survivor, Lisa Ray, started telling hers. Storytelling is contagious and it’s the one thing that shouldn’t be cured.