Aging With HIV
With improvements in the treatment of HIV disease, more and more people are living into midlife and beyond. According to the 2007 CDC AIDS Surveillance Report, 31 percent of the estimated 1 million people living with HIV in the United States are over age 50. From the rate of population increase, it is expected that people over age 50 will represent a majority of those infected by the year 2015.
As the fourth decade of the AIDS epidemic approaches, we are at the forefront of a new era: the challenges of aging. Neither the AIDS community nor the aging population itself can respond to this issue alone. Clinicians, researchers, and policy makers from the fields of AIDS care and gerontology must come together. People living with HIV need to lead the discussion in order to develop a model for optimal aging with HIV.
At a recent White House meeting on "Aging with HIV," over 100 researchers, clinicians, and people living with HIV gathered to discuss aging and the AIDS epidemic. The concluding message: Aging with HIV represents a huge challenge for our already underperforming health care system.
Aging with HIV is much more than just a policy issue, however. People living with HIV are experiencing the challenges of aging physically and emotionally.
Many want to know how HIV and the medications used to treat the virus interact with the physical changes (and medical regimens) that accompany aging. They wonder what they should do about their careers at this stage of life. And, they question whom they can rely on as they grow older.
Everyone must face physical, social, and emotional challenges as they age. But optimal aging can be more difficult to define when living with HIV. In order to identify and adapt to the challenges of aging, people living with HIV must first overcome two obstacles.
Shifting the Mindset
They must shift their mindset to living longer than they expected. For many gay men, the challenges of aging were never anticipated.
This generation has spent the last two decades embroiled in a battle with the AIDS epidemic: caring for themselves and loved ones; living through immeasurable losses; and managing their own threat of mortality. This war has consumed their emotional resources and few had the time to consider aging, especially when they never thought they would live into middle age and beyond.
For many HIV positive gay men, aging is not a gradually evolving development, but a sudden and immediate concern that demands attention.
Coping With Loss
The second obstacle is the magnitude of loss experienced by this generation of gay men living with HIV. Many have lost all their friends to AIDS.
Not only is this an emotional burden, but it is also a challenge to healthy aging. The gerontological literature tells us that aging is best conducted when surrounded by our peers.
We travel through life with friends, family, acquaintances, and even strangers. We see them grow older and through that mirror our own aging is reflected back to us. We discuss our concerns with them, get support, and commiserate about our common symptoms. This "convoy" of support is integral to managing the transitions associated with aging. Gay men living with HIV must rebuild their social networks and reestablish a convoy of support in order to adapt to their challenges of aging.
Unique Strengths for Coping
Gay men living with HIV also have unique strengths to face the vicissitudes of aging. In 1978, Dr. Douglas Kimmel used the term "crisis competence" to describe the resilience he identified in gay men as they age. He found that managing the coming out crisis gave gay men fortitude to face the challenges of growing older.
Gay men living with HIV who manage the stigma of diagnosis, AIDS-related losses, and the physical complications of illness, should, therefore, have a great deal of experience to draw upon to meet the psychological, social, and physical changes of aging.
In my research, I found that gay men experience many of the same challenges of aging faced by other groups. They must accept the way age reshapes their bodies; define new roles for themselves at work, in their relationships, and within their families; adapt to shifts in their interests and social involvement; and reconsider their sex lives as they age. Optimal aging involves adapting to a great deal of change.
But HIV can complicate all these adaptations. Let’s consider, for example, the issue of "symptom ambiguity," the difficulty determining whether an ailment is age- or AIDS-related. The men I interviewed asked, "Is this ache just normal aging, a complication from medication, or a sign of HIV-disease progression?"
Unable to answer these questions, people living with HIV often have difficulty formulating a response. Do they just accept it? Make lifestyle changes? Or is medical intervention necessary? Doctors don’t always know the answer either. There is increased research in this area, but the medical implications of aging with HIV are still largely unknown.
Taking an Active Role
Much like the early days of the epidemic when no one had all the answers, people living with HIV must take an active role to fill in gaps in the knowledge base. They must draw upon their own experience, talk with others in the same situation, keep abreast of new developments in the field, and partner with their doctors in order to respond to the challenges of aging.
Let’s start conversations across the country that normalize the experience of aging and empower the community to define for themselves what it means to optimally age with HIV.
Dr. Masten is the author of Aging with HIV: A Gay Man’s Guide, (Oxford University Press 2010). He teaches at New York University’s School of Social Work, and has been a clinical research consultant for Yale University School of Medicine, Duke University, and the Medical College of Wisconsin. Dr. Masten has a private practice in psychotherapy in New York City. To contact Dr. Masten, visit his blog.