You can get lost in the big city, but in small towns few people go unnoticed, and everyone's business is open to speculation. "They don't have much else to do but gossip," said one rural HIV service provider, who asked to have their name withheld.
It's not like city folks don't poke their noses into each other's business. But the fear of being found out, where everyone knows who you are, and there's nowhere to hide, adds stress to the lives of rural people living secretly with HIV. Meanwhile, the need to hide adds a false sense of invulnerability to the rest of the local population, who don't realize that HIV exists in their community.
Banks, who was born and raised in the small town of Unadilla in upstate New York, has been a longtime advocate for the needs of rural people living with HIV. As a young gay man and a rural person himself, he takes special interest in how HIV messages are being provided to a population that sees itself as invulnerable. "I heard one speaker say that if you took away New York City and the prisons, New York state would still be No. 10 in the country for AIDS cases," he recalls.
Banks respects the neighborly value of looking out for one another. The questions people ask, he says, are "not so much gossip but a tradition of people taking care of each other." Still, he concedes that people are nervous about the potential for breaches in confidentiality, and that they suffer for exposures forced upon them. One of Banks' clients received an eviction notice as a result of such a breach. He didn't even know that the receptionist at his health clinic, located in another town, was his landlord's daughter. The receptionist was fired, and the eviction did not take place while the case was being litigated, but the client died before the case came to trial.
In the August issue of AIDS Care, researchers reported finding two types of confidentiality breaches in rural North Carolina health care settings: blatant ones like the one above, and subtle ones where healthcare providers talk about an HIV-positive patient with another healthcare worker at their own clinic or hospital, which is allowed by law. (They're not supposed to talk about a person's HIV status with another institution unless given permission.) Of the 15 positive people they spoke with, the majority had experienced a breach of confidentiality themselves or knew of someone else who had.
Banks remembers being unable to leave voice messages or send mail to clients who were afraid that their children might learn of their HIV status. People who saw someone they knew at an educational event would "be a mess" even after the person said over and over that they wouldn't tell anyone. One client went to great lengths to circumvent the benefits manager of her company, who was a friend of her father. Another woman lives in the same town as an HIV specialist, but travels two hours away to see a different doctor so the word can't get out about her HIV.
"There may be competent healthcare workers in your area, but they -- or their staff -- may know your relatives, so your confidentiality is not assured. Even though you have legal recourses, by then it's too late. No one wants to be shunned in their own community," Banks says.
Debra Patterson, who works with the Madison County AIDS Program in rural southern Illinois, says many of her clients are fearful of being exposed. "They're afraid . . . of rocks being thrown at their house, of being run out of town, of people not talking to them."
Banks says people "rightly fear" HIV because they have no exposure to it. "People in New York City are more aware of HIV. They see more billboards. But you can be in upstate New York and never see a single one. Fear comes from lack of exposure."
Patterson also hears about transmission myths that were long ago dispelled by the US Centers for Disease Control and Prevention. "People ask me how come they can't get it from mosquitos. When I tell them, they say, 'The government doesn't know everything. It's a new disease.' No matter how much I try to educate people, they're still going to believe what they want to believe."
There are other misperceptions as well. A member of a sorority where she spoke said Patterson "didn't look it [infected]." "I told her that was the point, you don't look it." An elderly woman told her, "You can't have AIDS. You're fat, and you're just getting fatter."
Yet, when she tested positive five years ago, "I just remember thinking, 'Oh my God. I must be the only one.' The counselor told me, 'You would not believe the numbers that are in Madison County. More than you would think.'"
Last year, when she began working for the Madison County AIDS Program as a treatment educator and advocate, as her new boss drove her around she would point out streets where clients live. "I know someone there and over there and down here," and on and on.
And as she works with positive clients, she hears the stories of risk. One young woman in another town tells her of a group of people sharing needles, and of one guy with HIV sleeping around. Another woman told her of meeting two men through the Internet, traveling to their states and having sex with them without telling them she's HIV-positive. Patterson herself sometimes finds that men walk away when she tells them of her HIV, but three men still wanted to have unprotected sex with her. She walked away from them.
In the early days of the epidemic, many small town people who had moved to the big city returned home when they became ill with HIV disease. But today, says Banks, "There are still some people 'coming home,' but the majority of infections I hear about now are in people who've never left."
Research has found that compared to urban people living with HIV, those living with the virus out in rural areas are more likely to worry about their confidentiality being broken and have experienced more incidents of AIDS-related discrimination.
Since the early 1990s, Ohio University research psychologist Timothy Heckman has focused on rural people living with the virus, at a time when most studies were still coming out of areas like San Francisco and New York City. He and his colleagues have reported:
Today Heckman is finishing up the data collection on a study looking at telephone support groups. The groups operate like a conference call. Members are encouraged to exchange telephone numbers and stay in contact with each other.
In rural areas, coming together in a central location is difficult not only because homes are so spread out, but because poor finances and inadequate public transportation, if it exists at all, make traveling a huge burden.
"The problems in Rhode Island are the same in Alaska. That's reassuring to them," says Heckman. "Even though they feel they're alone, there are tens of thousands of people in rural areas living with HIV. That's helpful for them to know."
And, he says, they also benefit from knowing that there are "a lot of professionals and people who really do care." In one study, he and his colleagues noted the importance of either improving the education and sensitivity of rural medical and mental health providers, or of linking HIV-positive people to providers who would be sensitive to their needs. They noted a study finding that 35% of rural nurses surveyed said they thought gay men were "disgusting."
What's also important about the telephone support groups was learning skills to address problems. The participants learn strategies from one another and from the facilitator of the support groups.
Heckman recommends that people break down their problems two different ways: those which you can do something about and those you can't. In the first case, you try to figure out what exactly the problem is and then what you can do, and in the second case, you deal with your emotions in positive ways. For example, if you're having troubles taking medication, try to figure out why. Too many pills? Too burdensome of a dosing schedule? Side effects? Then you deal with those issues. Getting help from a friend or a healthcare provider is a good idea.
In the second case, if, for example, someone you love has died, you deal with your emotions. Heckman points out that ways people use to deal with their emotions may be good or bad, depending on degree. If you go to the movies to give yourself a mental break, that's good. If you do nothing but watch TV twenty-four hours a day or stay online all night, that's bad. In the first instance, you give yourself some breathing space from the problem and help regain your emotional balance. In the second, you don't deal with your emotions at all. Too much alcohol or drugs is a common problem in this scenario, he says. Those behaviors bring other problems of their own -- including the destruction of new relationships.
For More InformationRural service providers and people living with HIV say that the best way for positive people to get support is to get involved with an HIV service organization. The Centers for Disease Control and Prevention National AIDS Hotline can tell you what organizations they have listed for your area. Call 1-800-342-AIDS (2437). They can also give you the HIV/AIDS hotline number for your state, which may have additional listings. Providers note that home visits are a "necessity" for serving people with HIV in rural areas.