`No one thinks older persons are at risk'.
Fowler, herself, did not think she was at risk. She had been married to one man for over two decades before divorcing in 1983. Three years later, at the age of 50, she had unprotected sex with a friend she had known her entire adult life. She never considering using a condom because "condoms for people of my generation were for birth control and I had had in my 40s a surgical procedure to prevent pregnancy."
Also, Fowler never expected her friend to be infected. She believed she knew him well and she trusted him. "Older people often think that HIV won't happen to them," she says. "Also, you may think you know a person well ... perhaps he has the same background, the same education, and so on. He may seem healthy. So you think there is no need to be concerned about unprotected sex. But you must always be concerned, because no one ever knows anyone else's true sexual history."
Fowler was diagnosed with HIV at a time when antiretroviral drugs had become available and her use of those drugs has helped prevent her infection from developing into AIDS. "I am blessed," she says. Yet, during the first years after her diagnosis, "I withdrew and lived quietly. I withdrew because I lacked the courage to face possible discrimination, rejection, intolerance," she says. During this period, Fowler shared what was happening to her with her family and a small group of friends whom she could trust.
Such a reaction, especially among older HIV-infected persons, is not unusual. "Not only does one experience the stigma of aging, but there is the stigma of having a disease caused by drug use or sex," Fowler says. "I did not use drugs and I lived a conventional lifestyle. I was not promiscuous. But if you are HIV-positive, people tend to think you have been promiscuous and, worse, cannot understand how an older person could be sexually active, let alone promiscuous."
Despite the stigma associated with her infection, Fowler ultimately concluded that her self-imposed semi-isolation was a mistake. "I decided to publicly acknowledge my predicament and bring a prevention message to noninfected people, particularly those my own age," she says. "Suddenly, I became determined to make a difference. I decided to stand up and say: `Look at this wrinkled face. This is another face of HIV.'"
In the spring of 1995, Fowler became what she calls an "HIV/AIDS activist." She has now given about 500 speeches to audiences of all ages and helped found the National Association on HIV Over Fifty, for which she served as board cochairperson for five years. She now directs the national HIV Wisdom for Older Women program (Web site: http://www.hivwisdom.org) based in Kansas City, and is actively involved in numerous other HIV/AIDS-related organizations.
Among the many messages she shares is the need "to dispel the myth among health care providers that older people are not sexually active and are not engaging in behaviors that put them at risk for HIV. I have spoken to numerous acquaintances and none have had their sexual history taken by their health care providers. An older person's sexual behavior is not something that providers want to talk about."
That is not surprising. "Imagine a health care provider in his or her late 30s or 40s sitting across the desk from a woman 60 or 65 years old," Fowler says. "It's like talking to `Mom' about sex. That's uncomfortable, and so it is not often done. Also, in some cultural contexts, providers who are younger than their clients would never ask such questions, out of honest respect for their elders."
Older HIV-infected persons often sink into depression and isolation because "they are probably not as good at participating in support groups as younger people," Fowler says. "And, because of the stigma of the disease, many older women may not be able to tell members of their families."
Fowler says she is fortunate that her 38-year-old son, with whom she was always candid about sex, "was and remains my best support. Without his support and that of his fiancee, I could not do what I am doing these days." The drugs Fowler once took restricted her life, but her current drug regimen is simple and interferes little with her activities. "With each year, I become busier, going wherever I am invited--crisscrossing the country, even traveling abroad," she says.
Meanwhile, Fowler is encouraged that many other older people will avoid her fate. "Many people in their 50s who are in new relationships are now demanding that their partners be tested for HIV infection before beginning a sexual relationship," she says. "And my advice is to always talk about protected sex before you are in the heat of passion. If your partner refuses to use protection, find another partner. Having unprotected sex--even with someone you think you know well--is not worth risking your life."