I feel the chronic pain/chronic illness patient movement is today where the feminist movement was just before the social upheaval of the 1960s: We’ve been told we’re crazy, demanding, and otherwise problematic, when we’ve simply self-advocated for basic respect, dignity, and quality health care. And becuase to date we may not have had communal support, we may have ended up feeling beaten down, defeated, and isolated — further exacerbating the health condition with which we’ve been living.
Like Charlotte Perkins Gilman’s book The Yellow Wallpaper, and like the social consciousness raising groups that started decades later, our blogs, articles, and books are connecting the dots between the personal and political, and we’re beginning to recognize that we are not alone. That’s where the power and potential for radical change come in.
And so for me, the highlight of the BlogHer 09 conference was meeting women bloggers living with and healing from chronic pain or other forms of chronic illness, or advocating for family members with chronic health conditions. These women were full of a powerful life force — dynamic, intelligent, cutting-edge, passionate, and hell-bent on juicing life to its maximum potential. Despite overwhelming backstories and tremendous physical limitations, they were out there partying all night long. Even in fabulous high heel boots.
Connecting with each other mutually inspired us to be even stronger, bolder, and more raw and authentic than before. During the panel where I spoke about this blog, for example, I shared the various fears I had in telling my story, and I shared how I started telling it anyhow. Katrina Carefoot, a woman advocating like a fierce mama lion for her son with autism, later approached me – saying that hearing me talk about my own journey inspired her to be more open and real about hers. Getting that validation in turn inspired me to be more open and real about mine. And on it goes.
I was deeply honored and further emboldened by the blog post Katrina wrote about her experience at BlogHer 09. It is so validating, giving me an injection of love and strength to keep on keeping on. What’s more, it acknolwedges me above and beyond my experience of pain — pointing to the life I enjoyed before all the craziness happened, to the person who exists before and beyond all the health care trauma. It publicly reminds me: I am not this pain. I am not a victim of the health care system. I am so much more.
Interestingly enough, that vivid, in-my-face awareness — that I am so much more — was what got me started on the Dancing with Pain journey.