Guest blogger Meredith Gould is on Twitter as @meredithgould and @HealthFaith.
Over a year ago, I agreed to write about my personal experience with fibromyalgia for a new health and wellness site. The piece wasn’t going to be published for a while and although I was comfy with what I’d written, I was in no rush for it to go live. After all, I’d spent 25 years keeping this information private, and only very close personal friends knew.
But then I decided to post “My Fibromyalgia Story” on my personal blog and on Twitter for Fibro Awareness Day (May 12, 2011). The swift and supportive response included lots of back channel communications along the lines of, “Wow, you have fibro? I had no idea.” Yep, that was my goal.
I had my reasons for not wanting to communicate about what can, at times, be a fairly debilitating chronic illness. Most come under the general heading of stigma and the management thereof. As a sociologist, I knew about the perils of adopting any illness as a primary identity and didn’t want to get caught up in that. I had a tough enough time managing my identity as a writer, educator, and gadfly.
Plus, I had neither energy for nor interest in naming and claiming an illness that’s basically inexplicable, untreatable, and invisible. For me, this denial served an additional function — it kept me ambulatory and active. Magical thinking? Creative coping mechanism? Whatever. Over the years, fibromyalgia has dinged my professional career(s), inhibited my income earning potential, and trashed my health insurance coverage situation. I was not about to invite even more trouble.
So, why go public now about my fibro?
Active involvement with healthcare social media communities has me convinced that patient participation leads to patient empowerment. Patient empowerment, in turn, leads to patient engagement. And, as we know, patient engagement enhances the diagnosis and treatment process, especially when the illness baffles medical professionals. Fibromyalgia qualifies as that type of illness. Simply put, it was time for me to speak up. Any other questions?