As a woman with HIV in the ’90s, I was a fringe statistic. Now, finally, the scientists and docs are catching up
In the mid-’90s, when I first had HIV, I was sometimes the only woman in my doctors’ waiting rooms. When it was my turn to see the doctor, I was full of questions about how the virus affected women in particular, wondering whether there were things that I should be doing to support my health—for now and for the future. The answer was always: “I don’t know.” It was infuriating and frightening for me to realize that my specific health care needs as a woman were being overlooked for lack of both information and interest.
There were other problems, too, with the fact that doctors treating people with HIV or AIDS back then had mostly male patients. When mine examined me, they usually skipped the female parts of my body altogether (though HIV affects them too). One doctor asked whether I wanted him to conduct an ob-gyn exam after confessing that the last time he’d touched a woman “down there” was in med school. I said, “No, thanks” and had my ob-gyn inspect my privates instead, even though she didn’t know much about HIV.
It’s hard to blame the doctors for this state of affairs. There wasn’t a lot of information back then on how the disease was different for women and men—and much of what they did have was wrong. They thought HIV progressed faster in women, for instance, just because it was so often caught late. Today, it’s understood that the virus behaves just the same in men and women.
But the truth is: I felt all alone. There were no support groups and no websites for women with HIV, so it was almost impossible to find other women in the same boat. Even the prevention and treatment literature seemed directed only at gay men. Not to mention how well gay men had learned to talk about HIV with one another, while the subject was still very much taboo on girls’ night out. Little by little, over the last ten years, I have noticed more women like me in the waiting room.
Recently, I became editor in chief at POZ magazine (and disclosed my HIV positive status to the world at the same time). I made my decision to leap into the public eye after learning that women are one of the fastest-growing segments of people with HIV and that women represent nearly half of the worldwide count and a third of those infected in the U.S.
To use a cliché: We’ve come a long way, baby. I am not glad that women now have equal representation in the world of HIV, but I am grateful that the medical community has stepped up to address our needs. Doctors are more tuned in to positive women’s special concerns than ever before. There is research on how the disease and the treatments affect women’s bodies. There are strategies specifically aimed at helping women, and, as a result of both more awareness (including how important it is to get tested in the first place) and better treatment, we are living longer, healthier lives than ever before. We’re looking to the future, making big plans for ourselves and even having negative children.
By our very nature, we women can be difficult patients, stubbornly continuing to care for others before turning our attention to ourselves. Time and again, you hear of women holding out until their health is in dire straits before seeking the help of a doctor and of men climbing into bed at the first sign of a sniffle. (You know it’s true!) Our high threshold for pain and tolerance doesn’t always suit the greater good, however. As I’ve learned in a decade of battling HIV, we can’t be of much help to our loved ones if we aren’t fit ourselves.
In the interest of keeping ourselves in the best shape possible, POZ has put together this guide to health for women with HIV. The women on the following pages—HIV positive women, many of them moms, and a range of doctors devoted to their care—are also good evidence that we are not alone. They certainly make up the community I’d been looking for.