Older HIV patients deal with the double stigma of having the disease and being old
Older HIV patients deal with the double stigma of having the disease and being old
Big worry: 'Will I get to see grandkids if I tell?'
When Charles A. Emlet, PhD, MSW, ACSW, an associate professor at the University of Washington, Tacoma, first began working in the area of HIV 20 years ago, he saw some older patients, but they typically did not live for more than a couple of years after they were diagnosed.
"At that point to be old with HIV meant you had been infected at an older age," says Emlet, who also is the acting director of the social work program at the University of Washington.
In the past decade, the numbers of older people infected with the disease have grown to include people who were infected before age 50, but due to antiretroviral therapy have lived to become middle-aged or older.
Besides dealing with more chronic health conditions and comorbidities, older people with HIV have to cope with the double stigmas of being HIV infected and being older in a youth-oriented society, Emlet says.
In a recent study, Emlet found that 96 percent of the interviewees had experienced HIV stigma, and 68 percent of older HIV-infected people interviewed said they had experienced stigma because of both their disease and their age.1
"Providers were surprised of their HIV status because of their age," Emlet says. "There was one provider who told one of my informants, 'You're awfully old to have this disease.'"
Emlet used that line as a title for his study about stigma and ageism.
Another man said he'd been rejected because of his HIV status. His friends would no longer play handball or basketball with him, Emlet recalls.
"Their fear was that in a contact sport, someone might bash him in the nose and if he started to bleed, there'd be blood products they didn't want to deal with," Emlet says. "So he felt very rejected and stigmatized by his friends."
Another man said his religious community had rejected him once they learned of his HIV status, and a woman described rejection by her family, he adds.
"Several people talked about violations of confidentiality and people sharing HIV status without their permission and the devastating ramifications of that," Emlet says. "One guy talked about being incarcerated and the guard wanted to know what all of her meds were for." The man wouldn't tell him, so the guard went to the nurse and she told the guard about the man's HIV status. The guard subsequently disclosed this private information to the man's own sister, Emlet says.
Nearly a quarter of the people interviewed shared examples of breeches of confidentiality, Emlet notes.
Emlet's research found only isolated incidences of discrimination by providers. "By and large these people did not have experiences of ageism," Emlet says. "They felt their medical providers treated them very well and didn't discriminate based on their age."
There still was the problem of health providers not talking about HIV as a possibility with patients and misinterpreting symptoms that were related to the disease, he notes.
"One woman said, 'If you're 50 and someone's grandma, you're not supposed to have HIV disease,'" Emlet says. "Another woman said she thought older adults were held to a higher standard and were supposed to know better than to get infected."
Another common theme was rejection, either internalized or with specific examples from their lives. "A lot of people felt what I called separate or alone," Emlet says. "They felt very other than the rest of society, and it was an interaction of HIV stigma and ageism." For example, one gay man talked about how younger gay men wouldn't have anything to do with him, he says.
Often, older and newly-diagnosed HIV-infected patients worry about disclosing their HIV status to their children out of fear that they'll be cut off from them and from the grandchildren. "We had one patient in his late 50s who had finally come out to his family about his HIV status," says Kathleen Casey, MD, chief of infectious disease at Jersey Shore University Medical Center in Neptune, NJ. "His children and siblings didn't know, and it's been a major struggle for him," Casey says. "He was afraid they wouldn't want him around the grandchildren, but he has had a happy ending to this."
Since disclosing his status, the man's family has rallied around him and provided much-needed emotional support, she adds.
Another issue newly-diagnosed, older HIV patients deal with has to do with the mode of transmission. For example, one 72-year-old man had to disclose his HIV status to his wife, who was unaware that he had been engaging in bisexual behavior during their 47-year marriage, Emlet says.
"There has been some data that suggest the longer you have the disease the more people you disclose to, and for some people there is some social support," Emlet says. "So newly infected people are dealing with the disease, a new diagnosis, potential stigma, issues of comorbidity, and whether they disclose their HIV status and to whom."
Disclosure could help them by providing some desired social support, or it could hurt them by resulting in their feeling even more alone and stigmatized, he notes.
"For the people who are aging and have had the disease for 15 years, they know who's in their corner and who's not, and they likely have disclosed over the years to a lot of different groups of people," Emlet explains. "For the newly-infected older person, they're trying to make that distinction."
Thanks to antiretroviral therapy there now is a population of older HIV patients who might have once been certain they would die of the disease, but now can imagine aging and dying of the same diseases as most other people their age, he says.
"I interview a lot of older people now who are long-term survivors, and many say, 'I'm not going to die of AIDS,' meaning they'll die of something else," Emlet says. "I've talked with people who had strokes, hip displacement surgery, severe arthritis, and if their HIV is reasonably managed, they're much more concerned about these other diseases."
Reference:
- Emlet CA. "You're awfully old to have this disease": experiences of stigma and ageism in adults 50 years and older living with HIV/AIDS." Gerontologist. 2006;46(6):781-790.
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