It took Carole three and a half years to be diagnosed, during which time at least 10 specialists suggested she might have lupus, chronic fatigue syndrome, rheumatoid arthritis, or even a rare infection picked up overseas. One doctor said the problem might be in her head and prescribed a tranquilizer. "I had all the classic symptoms that should have screamed ‘Test this woman for HIV!’" Carole says. "But not one doctor asked me about my sex life, which I find insulting."
By the time they are diagnosed, many midlife women are, like Carole, already very sick, sometimes with AIDS, the cluster of life-threatening conditions and cancers caused by long-term infection with the virus. In surveying her roughly 100 midlife patients, Gallagher found that many had been infected for four to five years before doctors thought to test them. "The more you look like their wife or mother or daughter, the less the doctor wants to talk about HIV," she says. Today, more than one-third of American women with HIV are tested so late that they are diagnosed with AIDS within a year. Midlife women have even less breathing room: In Massachusetts, 38 percent of women over 50 who’ve just been diagnosed with HIV progress to AIDS within a mere two months. Half of Gallagher’s newly diagnosed patients, ages 50 and older, already had AIDS when they were tested; the rate was only slightly lower for women in their 40s.
Many doctors now recommend that women ask for an HIV test as a matter of routine during their yearly physical or ob-gyn checkup. "Your chances are better the earlier the disease is caught," says Judy Currier, MD, a professor of medicine at the University of California at Los Angeles and a pioneer researcher into women and HIV/AIDS. Even women with late-stage infections can benefit from using anti-HIV drugs, called anti retrovirals, which can reduce the blood level of the virus and boost immune response. But after years of carrying the virus, women may have any number of serious infections or diseases that make treatment more difficult, side effects more pronounced, and recovery less likely. "If you treat somebody early, before her immune system has failed, she may live to be as old as your grandparents," says Gallagher, who has cared for people with HIV since 1982. "That’s what’s taken away from women when they’re diagnosed late. Even women who are still here are much more frail."
Surviving the Social — and Sexual — Stigma
Learning you have HIV is only the beginning of a strange, uncharted journey, women say, one with repercussions for every relationship. "All my friends walked away from me," Carole says. "My best friend just couldn’t deal with seeing me sick, couldn’t deal with the changes in me. But I said, goddamn it, I’m Irish. They’re not going to kill me that easily." Carole roared into gear. She spoke widely about her experience and for a time ran an HIV-education program. But, despite all that high-profile activism, Carole isn’t using her last name for this story because she doesn’t want to hurt her husband or lose any more friends who might avoid her if they knew she had AIDS. "Women with this disease tend to hide in the shadows," she says. "And I can understand why, judging from the reaction of family and friends."
Delores, 48, an elegant African-American woman with closely cropped white hair, also chose to come out fighting, only to become a bit more circumspect about whom she tells. (She, too, chose to use only her first name for this article.) Eight years ago she had a well-paying job at a pharmaceutical firm, a great apartment, a tight bond with her children, and a new boyfriend she really liked. "I was taking life by storm," she says. "My older daughter was getting ready to go to college. I finally felt that I had done something, and I was happy." She didn’t ask her boyfriend to use a condom when they had sex because she’d had her tubes tied. As for HIV, it never crossed her mind. "I can honestly say the message was there, but it wasn’t a message I heard often in my circle of life," she says. "Never did I dream this guy was infected. He had a good job, took care of himself, and lived well. I don’t think he thought he was infected."