I was just thinking about Randy Shilts’ And the Band Played On, an extensive history of the first years of the AIDS epidemic. While I don’t usually like to bandy about that term in relation to my body, something struck me–people with AIDS often knew much more about their health than their doctors. Community awareness and the spread of information was coming from within, while the press bandied about terms like “gay disease”. A lot of medical professionals were educated BY their patients about what to expect and what symptoms meant. It’s not too late to educate your doctor about your health, to stop being treated like a public crisis and regain your status as a human. We know about our bodies. We know whether losing weight would help our cough or our joints. We have family histories, we have lived in cities and towns with pollution and poverty, or wealth and health. They may be able to tell if a gland is inflamed, but they will never know our bodies and their changes the way we do by living them.

Forums like these are incredibly powerful, like the communities that spread information about AIDS before medicine caught up. When we speak out about our own bodies, our “anecdata” can help create our own history.