"He Was Lying About the HIV Test"
Ann Silver* isn’t easily swept off her feet. A tough-talking, darkly funny woman, Silver, 45, dated plenty of men in her 20s and 30s, but took none of them seriously, until six years ago when she met Wesley. He was smart, sexy, and well-read, and seemed to savor her flaws as well as her fire. They watched the sunset together almost every night, strolled through San Diego’s Balboa Park on weekends, played golf, or simply lay entwined on her couch. At 190 pounds with a strapping build, Wesley "was the healthiest man I knew," says Silver, who works as a corporate manager. "And he made me feel loved, unconditionally. I’d never felt that before."
Still, she was no pushover. Before they went to bed for the first time, Silver was characteristically blunt: She’d been checked for the human immunodeficiency virus (HIV) during a routine physical exam and had tested negative, she told him. Then she asked, "What about you?"
Wesley smiled and caressed Silver’s dark, shoulder-length hair. "I get tested every year," he said. "I just had one, and I’m fine." They didn’t bother with condoms because neither liked using them, and Silver, then 39, wasn’t worried about getting pregnant; Wesley said he’d had a vasectomy.
That part was true. But he was lying about the HIV test.
On Valentine’s Day 2006, nearly three years into what Silver had assumed was a monogamous relationship, Wesley lay near death in a hospital — gaunt, unable to breathe, and in a coma his doctors had induced in order to stop his organs from shutting down. He’d suddenly taken ill a few weeks earlier, and Silver had no idea what was wrong with him. When she bombarded the doctors with questions, they were strangely evasive.
At home later, she typed Wesley’s symptoms into her computer browser: diarrhea, fatigue, no appetite, difficulty breathing. "HIV kept coming up," Silver says. She stayed on the Internet for two sleepless nights, frantically researching the disease. Then it struck her: The previous month, she’d come down with what had seemed like the flu — high fever and a sore throat so painful it felt as if she’d swallowed glass. Antibiotics made her feel better. But two weeks later, hives had erupted on her legs and stomach. Now, cold with fear, Silver realized that many of her maladies matched the symptoms people sometimes develop a few weeks to a month after contracting HIV.
Early the next morning, she walked into a neighborhood clinic and asked for an HIV test, her first in over a year. A nurse took a blood sample and returned 10 minutes later. "You tested positive for the virus," she said. "But the test is only 99.6 percent accurate. You’ll need to get a confirmatory test."
"I’d go to Vegas with those odds," Silver replied.
Returning to the hospital, she stared at the man lying comatose on the bed, as if seeing him for the first time. "He had AIDS," she says. "How had I missed it? He looked like Tom Hanks in Philadelphia." From the decimated state of Wesley’s immune system, doctors estimated that he had been carrying the virus, untreated, for nearly a decade. (Acquired immunodeficiency syndrome is the final, full-blown stage of infection, when the body can no longer fight the disease on its own.)
Back in the 1990s, that diagnosis might have sealed both their fates. But Wesley — who, it turned out, had been cheating on Silver with five other women, all of whom he had lied to — survived. Silver nursed him back from the brink and then broke up with him. Today she is a woman in her prime, asymptomatic, who expects to live fully and die old. But she is still incredulous at her fate. "I am the girl next door," she says. "I look like everybody else. My only crime was to have unprotected sex with the man I loved."
HIV is on the move again — and this time it is climbing the social ladder, reaching into the ranks of middle-aged, well-educated professional women who have long assumed they live comfortably beyond its grip. Unaware of the danger, most over-40 women are, like Silver, making a deadly gamble: They are trusting the men in their lives and doing little to protect themselves from the virus.
* Some names have been changed.
The rate of new HIV infection among women in the United States has stabilized since the early 1990s at about 15,000 a year. Yet because of improved treatment, more American women are living with HIV/AIDS than before, constituting over a quarter of the nation’s estimated 1.1 million-person case load (up from eight percent of the total in 1985). The disease continues to hit low-income African-American and Latina women the hardest; black women of any income level are 21 times more likely than white women to contract AIDS. But there is one new and frightening trend, and it is epitomized by Ann Silver, a 45-year-old heterosexual woman: Today, one in three women newly infected with HIV is over 40 years old; one in four is between ages 40 and 49. "We are the hidden epidemic," she says.
How these women get the disease is no mystery. In 2006, eight in 10 newly infected women were exposed to the virus the old-fashioned way: by having unprotected sex with their husbands, boyfriends, or casual flings. Over-40 women may be particularly at risk because, unconcerned about getting pregnant, they often don’t use condoms, the best available safeguard against HIV transmission. (One recent British study found that only 29 percent of women ages 35 to 44 used a condom with a new partner, compared with 67 percent of women ages 16 to 19.) This blind spot about AIDS is particularly dangerous for midlife women who are dating again after divorce. "You’re relying on the rules from 20 or 30 years ago, but the rules have changed," says Susan Cu-Uvin, MD, director of the Immunology Center at Miriam Hospital, at Brown University, and an expert on midlife women with the virus. "You have to realize that HIV is one of the perils of living in this age and wanting to have sex." And that includes married sex.
"Mature women assume their partners are monogamous, and that gives them a false sense of security," says Kimberly Workowski, MD, professor of medicine in the Division of Infectious Diseases at Emory University. "They’re very shocked when they find out that their partner was having sexual contact with other women or with men."
There are no reliable numbers on how many married men — or women — are unfaithful to their spouses. But recent studies suggest that at least 22 percent of married men and 13 percent of married women engage in extramarital sex at one time or another during their relationship. (Some experts think the numbers, particularly for men, are much higher.) Is a straying husband more likely to use a condom? The story of former New York governor Eliot Spitzer suggests that wives shouldn’t bet on it: He reportedly refused to use condoms with prostitutes, putting his wife at risk for the disease. "Men are willing to take the chance of infecting their wives, because he can’t come home after 25 years of marriage and say, ‘Honey, I think we should start using condoms,’" says Donna Gallagher, a nurse practitioner who directs the New England AIDS Education and Training Center, in Boston. "That’s going to give it away. Married women may actually be at higher risk of getting the disease, because they’re having unprotected sex."
Back in 1989, Carole, then 42, started suffering from a strange assortment of ailments that her doctors couldn’t account for: chronic yeast infections, swollen lymph nodes, inflammatory pelvic infections, painful numbing in her feet and drastic weight loss. At the time, Carole had just quit her job as a marketing executive and was taking classes to become a radiologist. One night as she lay in bed studying for a test on the immune system, she noticed that the symptoms associated with AIDS matched her own. She says, "I pointed to the section in my textbook and said to my husband, ‘Hey, do you think there’s any chance I could have this?’ That was my way of asking him, politely, ‘Is there anything I need to know about what you’ve done?’ And he turned to me and said, ‘Of course not!’"
She wouldn’t learn the truth until almost four years later, in 1993, when a rheumatoid arthritis doctor, unable to find any other explanation for Carole’s collection of symptoms, finally asked if there were any chance she could be at risk for HIV. As Carole remembers it, she laughed and said, "Gee, I don’t think so. But go ahead, test me, and let’s eliminate that possibility." When she brought the results home, her husband broke down. He had cheated on her with another man, he admitted, and he hadn’t used condoms.
Men who have sex with both men and women — sometimes referred to as men on the down low — "are a significant bridge for HIV transmission to women," says CDC researcher Linda Valleroy, who conducted a 2003 study on the subject. About one in 10 men who have sex with men have also had sex with women in the past year, often without condoms. Furthermore, experts estimate that two-thirds of women involved with actively bisexual men don’t know it.
Today, Carole and her husband are still together. He’s asymptomatic; she has full-blown AIDS. "People ask me how I could forgive him," she says. "I have to tell you: Initially, I was pretty goddamn mad at him. I had a rocker in my bedroom, and I used to sit in it and think, hmm, should I kill him?" But Carole loves her husband, raised two children with him, and sees no point in ditching their comfortable life together. He also promised he wouldn’t have sex with anyone else, and she believes he hasn’t. Plus, she admits, she needs his financial support: Her medication alone runs $1,000 a month. No longer able to work full time, she couldn’t afford the expensive treatment without her husband’s income and insurance. "He never set out to give me this disease," she says. "I can forgive the infidelity. What hurt me the most was that he didn’t protect me."
Whether married, dating, or single, midlife women who are sexually active in the age of AIDS are caught in a perfect epidemiological storm. Their very biology makes women twice as likely as men to contract the virus from heterosexual sex: The vagina has a much larger area of exposed skin and tissue than the penis. Infected semen contains a far higher concentration of the virus than do vaginal secretions, and semen transmits HIV eight times more efficiently. Yet physicians, by their own admission in numerous interviews for this story, often don’t consider HIV when they examine women past their reproductive years and may be unlikely to offer a routine test. Even classic symptoms of the virus — chronic yeast infections, extreme fatigue, night sweats — are sometimes mistaken for menopause or other signs of aging. "It is amazing how badly we doctors do this," says Cu-Uvin, who directs a clinic in Providence, Rhode Island, that provides special services for menopausal women with HIV. "We seem to think there is an age when women stop having sex. You see a 54-year-old woman, and you will blame everything else for her symptoms before you think of HIV."
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."
The first glimmer of awareness came when Delores’s boyfriend told her that he had come down with hepatitis C, a virus that can, though rarely, be spread through unprotected sex. When Delores went to get tested, her doctor suggested an HIV check as well. "Why not?" Delores agreed. The results showed she didn’t have hepatitis. But her HIV test said, in red letters, "positive."
When Delores told her boyfriend about the diagnosis, he promptly dropped out of her life. She also told her mother, her three sisters and her entire church. "I got up in front of 500 people," she says, sounding as if she still can’t quite believe she did it. But talking about HIV to her children, especially her younger daughter, was a different story; she didn’t want her kids to know until she could talk to them without falling apart. "I hid it very well," she says. "I cried in the shower, where no one would hear me. I took more showers! I was the cleanest person walking around."
She bustled her older daughter, then 18, off to college, and broke the news to her six months later. But her younger daughter, then 9, found out on her own. Delores had been taking her every month to their local health center, where the girl played in the children’s area and Delores attended a support group for women with HIV that met in a room nearby. Delores hadn’t noticed the poster in the waiting area, displaying a typical array of anti-HIV medication. But the little girl saw it. One night on the way home, she started to cry. "Those are the drugs you take," Delores remembers her saying. "Those are the drugs you have in your cabinet. You have AIDS, and you’re going to die."
From that day on, every night before bed, Delores read to her daughter about people living fully, despite the disease. "We would read stories and testimonies," she says. "What I learned, she learned." And part of what Delores learned was to wrap some privacy around her family. "If I didn’t have children, I would come out, full-fledged," she says. "But I need to protect my youngest child, because kids can be cruel."
Some women never tell their children that they’re infected. One of Gallagher’s patients, a dignified African-American woman in Boston, went to her grave without revealing it. "Her five children to this day do not know that she died of AIDS," Gallagher says. "Or that their father, who infected her after seeing prostitutes for years, also died of it."
But that wasn’t Delores’s style. Getting HIV was a turning point for her — and not all of what happened next was bad: She quit her job, started giving talks about the virus in schools and prisons, and now coordinates a program for youths and families dealing with the disease. "This is my life calling," she says. "This I learned raw." Then, a few years ago, without really looking, Dolores met a gentle, thoughtful man who felt right. Telling him about her condition was hard. "I was at his house, and it was getting hot and heavy. I said, ‘I have something to tell you. I’m HIV-positive. Now you can take me home.’"
"He just stood there and looked at me," Delores says. "And then he cried."
Today they’re married, and their only nod to the disease is that Delores’s husband uses condoms and gets annual HIV screenings. "But we’re not too sexually active," Delores admits. "The medications do tap into that. Plus, I’m going through the changes. So sex isn’t the biggest thing on my list."
Don’t tell that to Ann Silver. She loves sex and misses it terribly — particularly kissing. But forging new relationships, romantic or otherwise, has been a challenge since her diagnosis. Desperate for an opportunity to talk about Lola, her nickname for the virus, Silver went to Christie’s Place (christiesplace.org), a lovely Victorian house in San Diego where HIV-positive women and their children come for a wide array of social services, healthcare, computer training, and even food and a haircut when they need it. Irene, the counseling group’s no-nonsense leader, saw right through Silver’s bravado. "You need to cry," she said.
"I wanted her to be my mommy for a minute," Silver admits. She still hasn’t told her own mother that she has HIV. "I’m her baby, and she’d be so proud of how I’m handling this," Silver says. "But I’m afraid she’ll think that I’m going to die." That’s one reason why she isn’t using her real name in this story. The other is that she’s afraid of losing her job.
Silver soon gravitated to the Web, where her acidly funny blog on POZ, a magazine and Web site for HIV-positive men and women, drew raves from readers. "It was a safe place where everyone was just like me," she says. But finding a new love was hard. Two years ago, she got up the courage and responded to an ad for a "man seeking woman" on Craigslist. She confided, right away, that she had HIV; he wrote back that he wasn’t worried. They met at a bar. "He was a total roughneck, tattoos everywhere, piercings, shaved head," Silver says. "Not my typical date."
They had chemistry, though. After one drink and some light banter, Tattoo Man (Silver’s term) leaned over and kissed her. "Oh my god that felt good," Silver wrote on her blog. "I love kissing. But, more important, he was negative and kissing me. Woohoo! I’m normal again." They made out like teenagers in a parking lot (Silver says she can never go to that bar again), then promised to see each other very soon.
She wrote him the next day, but heard nothing back. Two weeks passed. Finally, after Silver fired off another e-mail, Tattoo Man responded: "Hey, sorry I haven’t gotten back to you. After you and I made out so intensely, I got really freaked out. I ended up going to Urgent Care the next day because I thought you might have given it to me."
The next time she met a good-looking man at a bar and he asked for her phone number, Silver froze. You do not want to know me, dude, she thought to herself. What I’ve got to tell you, you can’t handle.
But dating only men with HIV, as many positive women do, didn’t feel right either. Stephen*, whom she met through Christie’s Place, was handsome, sweet, and very interested. They went out a couple of times. But there was a problem that Silver just couldn’t get over. "It was so obvious he had HIV," she says, aware of how that sounds. "He took meds and had some facial wasting. I’m just not ready for that. "It turns out HIV is not a bonding agent," she adds wryly. "I wish it was, but it’s just not."
Silver hasn’t given up. "Hopefully this new year will bring love back into my life," she says. "I’m hoping the stigma associated with this virus has lost its momentum." Silver recently posted her own singles ad on Craigslist. "I am ready to rejoin the dating world," she wrote.
How to Protect Yourself
Using a latex barrier such as a condom is an extremely effective way to prevent the transmission of the AIDS virus during sex, and only you can decide if it seems wise to ask your husband or partner to use one. Mary Gwynn, an HIV educator on Cape Cod, in Massachusetts, uses a simple rule of thumb when she counsels women: If there’s even a little chink, a little waver in my trust, I need to back it up with some latex.
Even if condoms don’t seem necessary, every sexually active woman should have an HIV test every year. Make a habit of asking for one at your physical or gynecological exam. (It is covered by most insurance companies; check with yours first to be sure.) Your husband or partner should get checked too. Many states also provide free, anonymous testing through their departments of health (Google "free anonymous AIDS test" and the name of your state). The process is surprisingly easy: The so-called rapid test costs just $10 and provides a result in only 10 minutes (you’ll need to get a confirmatory test if yours comes back positive). Some don’t even require giving blood; doctors can swab the inside of your mouth or use a urine sample.
Removing the stigma of HIV testing will go a long way toward defeating this disease, experts say. Health officials at the Centers for Disease Control and Prevention are urging doctors to integrate testing so seamlessly into healthcare that any time a person between the ages of 13 and 64 enters a clinic, doctor’s office or hospital, they’ll be given one, unless they specifically decline. As Carole puts it, "It’s always better to know. And if you’re diagnosed, don’t give up or hide. Hope and health are the two most important things."
Helping Women Live Longer
The newest generation of anti-HIV drugs — a multi-drug combination called highly active antiretroviral therapy — may in some cases reduce AIDS deaths by 80 percent, if treatment begins before there is major damage to the immune system and if the medications are taken diligently. "Folks who have HIV disease today can anticipate a normal lifespan," says Kevin Cranston, director of the HIV/AIDS Bureau for the Massachusetts Department of Health. "That’s something I could never have dreamed of at the beginning of this epidemic."
Another big plus: The multi-drug regimen appears to be less toxic to women than older drugs were. Tested almost exclusively on men, some of the earliest anti-HIV drugs were later found to hurt women’s livers or cause birth defects. One powerful drug that Carole took for years eventually caused lipodystrophy, a sometimes disfiguring shift of body fat. "I used to be beautiful," Carole says. "But now my face is sucked in. And with my high cheekbones, it’s really pronounced." Oddly, lipodystrophy melts fat away in the face, arms and legs while adding it to the abdomen, breasts and back. "I have skinny little arms, no ass and big boobies," Carole admits. "It’s a real chore to find clothes."
The newest medications don’t seem to have those effects, says UCLA’s Judy Currier. However, not everyone can tolerate them, and the jury is still out on their long-term safety: There’s evidence that the regimen, combined with the underlying HIV, may increase the risk of heart attack, diabetes, high cholesterol, and poor bone density. Nonetheless, Currier is pleased at the progress. "We lost so many people because we didn’t have effective drugs," she says. "It’s difficult to live with HIV, but, ultimately, treatment is what keeps people alive."
Alexis Jetter teaches journalism at Dartmouth. Her last piece for MORE was a profile of Janet Napolitano, in March 2008.
Originally published in MORE magazine, April 2009.
Single? Check out MORE Dating here.