The Worried Well
Being HIV negative during the worst years of the epidemic was very challenging at times. The focus of all our efforts, understandably, was on people living with AIDS, making it difficult to find ways to talk about NOT having HIV when so many around me did.
There were words were being used to describe uninfected gay men that I found offensive, especially the term ‘worried well,’ which was defined as: “People who are unnecessarily anxious about their physical or mental health.” The dictionary used it in a sentence like this:
“Doctors increasingly have to deal with the worried well, rather than the genuinely sick.”
I have a purple splotch on my left arm, six inches above my wrist, which has been there for as long as I can remember. And yet, beginning in June 1981, when the CDC first published accounts of male homosexuals dying of a strange illness, I would look at that spot from time to time and be startled, fearing it was a KS lesion. It was as if I’d forgotten it was there.
It would take a year before the San Francisco AIDS Foundation began and Shanti held its first Volunteer Training. It took another year before the original AIDS unit, 5B, opened at SF General Hospital, and then another year before the UCSF AIDS Health Project opened its doors. Finally, a full four years after initial reports, the HIV test became available and for the first time you could find out if you had HIV rather than waiting for AIDS symptoms to appear. It’s hard to believe now, but it would be another two years before ACT-UP was formed and serious focused activism began. And even then, with all the committed and determined work being done, it would take years before life-saving medications finally arrived.
So yes, through all those many years, there were times when I looked at that spot on my arm and be startled to see it. I was part of a large group of HIV negative gay men who were concerned about our health as well as the survival of our friends, our co-workers and our loved ones, but it was definitely much more than simply being worried, and we were certainly far from well.