My old friends, my new friends who are old, or older, sixty, seventy, take pills with meals or after dinner. Arthritis scourges them. But irremediable light is farther away from them; they seem to hold it at bay better than the young middle-aged whom something, or another something, kills before the chapter's finished, the play staged.
- Marilyn Hacker, Against Elegies
HIV no longer poses the death sentence it once did. In high-income countries, at least, it is a manageable chronic illness. But what does it mean to age with HIV?
James Masten examined this question in a study published this January in the Journal of Gerontological Social Work. Also co-author of the highly regarded Aging With HIV: A Gay Man's Guide, Masten drew on data from in-depth interviews with 15 gay men living with HIV/AIDS in the New York City area. The men ranged in age from 50 to 64 years of age.
Growing old with HIV
The study found participants faced four main hurdles:
- physical challenges
- sense of loss
- internal change, and
Physical challenges: Several of the men had lived with HIV for nearly half of their lives. They experienced a host of physical challenges, including fatigue, diarrhea, neuropathy and diabetes. They had to stick to a strict regimen of medication, exercise and nutrition to maintain their health. Many found the daily grind frustrating.
George, 58, described living with HIV as a "full time" job. He missed the social contact and regular routine of work:
Now, I'm starting to think that maybe if I could find something that was maybe even two days a week, 'cause I have to be very careful about not getting . . . stress is the killer. Stress is what kills you. And I'd rather be poor than stressed.
Mario, a 53-year-old hairdresser left his job at a downtown salon to work out of his home. The opportunity to work fewer work hours benefited his health, but it meant less money and fewer social opportunities.
Joe, 64, forced to leave work because of his illness, described aging with HIV as "a shrinking kind of life."
Masten found men struggled to balance the need to avoid physical and emotional stress with their desire to remain engaged.
Loss: Some of the men were adults during the earliest years of the epidemic, and most lost all of their friends to AIDS. Luis recalled friends "dropping like flies."
This traumatic loss eroded their self-confidence and left some wary of making new friends. "I'm just afraid of losing them all over again," one participant said.
Moreover, the decimation of the gay community to AIDS left many feeling out of place. Some struggle with feelings of guilt. As one man explained: "When I talk about Philip being dead and Roger being dead, then I feel like, well (Patrick) you're not."
Internal changes: The men discussed their changing priorities and shifts in attitude. Some reported feeling more comfortable with themselves, and more content with living on their own.
Others have scaled back their social activities. Instead of going to restaurants, Mario talked about meeting friends for dinner in their apartment. He rarely goes to gay bars and does not have a sexual relationship. Most of the men have adopted healthy lifestyles, giving up drugs and alcohol.
Few, however, have added new activities and relationships to replace what had been given up. In short, these men are surprised to have lived this long and they are unsure about how much time they have left.
Stigma: The men's efforts to live full lives are hampered by the triple stigma of homophobia, AIDS and ageism.
Each of the participants described how homophobia has shadowed their lives, resulting in:
- physical and verbal harassment
- loss of employment, and
- fear of disclosure.
In the 1980s, they were re-traumatized by the AIDS epidemic and the resulting AIDS stigma.
Today, many struggle to cope with ageism. Mark, 54, still goes to the gay bar in his neighbourhood occasionally, but he feels less welcome. "Gay men, it's all about young, pretty boys, blah blah blah, whatever," he said.
Forging new pathways
Despite challenges, the study found the men eager to rebuild their lives. Patrick talked about returning to graduate school in his 50s, for example.
Another 50-year-old participant works as a community activist. He sees his social justice activities as a way to honour the memories of his deceased friends.
Luis, 51, enrolled in a training program at the HIV organization where he worked as a volunteer. After his graduation, he earned additional money working as a peer counsellor. The opportunity to give back to others boosted his self-esteem.
Masten says that, while aging is part of everyone's normal developmental process, growing older with HIV poses additional changes and challenges. He argues community-based organizations must not only provide functional support for these men, but assess and treat depression.
Since social support fosters well-being in aging, he emphasizes the importance of helping individuals build on their strengths and develop effective coping strategies. Specifically, he recommends the use of group therapy to help men:
- build social networks
- foster new interests
- re-evaluate attitudes towards work
- work through loss and survivor guilt
- learn to cope with stigma of HIV illness, and
- share medical insights and information.
Masten stresses health and social services can potentially play a powerful role in enhancing the mental health and well-being of gay men aging with HIV/AIDS, especially in the absence of more intimate forms of companionship.