I’ve always been scared to advocate, to really put myself out there. Although I’ve been interacting with the Spoonie and Chronic Illness communities on tumblr and twitter for a while, I never considered myself an advocate. I put my story out there, shared advice, sent nice notes to people in flares. But I didn’t consider advocating.
Then, people started coming to me. Asking questions about how I was diagnosed, what I do to reduce flare times, how to ask their doctor for a referral. I was scared at first- what if I told them the wrong thing? I knew what had worked for me, but that wouldn’t work for everyone. Through Spoonie Chat, I started to build confidence. I joined groups for my chronic illnesses. I started silently following other healthcare and advocacy chats on twitter. I started answering questions when they were sent my way- yes, I know who you ask for ring splints. Here’s a pamphlet about Ehlers Danlos for your new doctor.
I’m still not where I want to be with advocacy yet, but I’m growing. I like thinking that I can help people avoid the years of misdiagnosis I had, or at least shorten their wait for the correct diagnosis, by educating the public and the healthcare system. I like to think that I can make a difference.