Aging with HIV: Long-Term Survivors Face Unique Challenges
Many people think of HIV as a condition that primarily afflicts the young. However, almost 20% of individuals diagnosed are over 50 at time of diagnosis, and more than half of all Americans who have HIV are over 50. This population of older adults with HIV is increasingly drawing attention. The 2015 White House Conference on Aging, for example, focused on the concerns affecting the over-50 HIV population with a goal of promoting healthy aging among this group. Yet the unique mental health needs of long-term survivors of HIV are often unrealized, though medical advances allow people with HIV to live, in many cases, a lifespan of fairly normal length.
The Challenges of Aging with HIV
In the best of circumstances, aging often presents medical and psychological challenges, but aging with HIV often presents a number of mental health complications, such as stigma, isolation, and survivor’s guilt, among others.
Within the over 50-population is a subgroup of long-term survivors—people who were diagnosed before the availability of the current standard treatment, highly active antiretroviral therapy. At the time of diagnosis, most of these individuals lived under a cloud of certain death—but many of them are still here today. This group may face uniquely challenging circumstances due to their unexpected longevity, both those that result from long-term exposure to HIV and treatments as well as psychosocial issues.
Advances in HIV treatment have been successful in slowing the progress of HIV, suppressing symptoms, and decreasing opportunistic infections. However, health conditions that typically appear in people in their 70s and 80s—disease of the liver, heart, and lungs; diabetes; osteoporosis; neurological issues—have been increasingly shown to develop in HIV-positive people as early as their 40s and 50s.
In addition to facing early-onset aging and certain medical concerns earlier than people without HIV might expect to develop them, long-term survivors also are likely to experience mental and emotional health challenges, such as stigma, bereavement, survivor’s guilt, as well as chronic exposure to trauma, both related to HIV and predating HIV. Many individuals may have begun planning for death upon diagnosis, only to find that early treatment and good health granted them many more years than expected. While this may seem positive, making peace with death and then remaining among the living is still likely to have an emotional impact on a person, especially when they must watch friends, relatives, or lovers pass on.
Long-term survivors who lose a number of friends, family members, or partners to HIV over the years may experience trauma-like symptoms or other effects of grief, and complicated grief and survivor’s guilt may become integrated into their daily challenges. Those raised in a society more hostile to the HIV+ community may also experience effects of long-term stigmatization.
The Benefits of Therapy for Long-Term Survivors
Therapy with a compassionate, nonjudgmental therapist can be beneficial to those attempting to address these and other concerns related to HIV and aging with HIV. A therapist can help those seeking treatment address their feelings on their condition and loss, cope with the diagnosis (in those newly diagnosed), or plan for a future they had not anticipated.
As new treatments emerge and the prognosis for a person diagnosed with HIV changes, many people find it necessary to adjust their outlook. Therapists working with members of the HIV-positive community, especially those who are over 50, may find it helpful to consider and explore the following:
How might long-term HIV survival and treatment complications impact the body? Has the person experienced serious illness and/or disability? Have there been significant body changes beyond normal aging (lipodystrophy, lipoatrophy) or lasting impacts from opportunistic infections? Has the individual experienced significant trauma or loss? The effects of these issues may manifest in a number of ways and may include personality changes, cognitive impairment, and depression. Mental health professionals working with individuals who have experienced significant trauma or loss may teach mindfulness and relaxation approaches before beginning in-depth therapeutic work to address the effects of trauma.
How has having HIV impacted a person’s financial status and living security, both for the present and the future? Many HIV-positive individuals may not have expected to have a future and spent their retirement accounts and insurance policies as needed, in the belief their life was coming to an end. HIV/AIDS services may provide some stability in the form of housing and support services, but those who have an extended life span may find that these services and supports eventually dry up. This lack of future stability, or fear of the lack of future stability, may be a significant issue for many members of this community. Counseling may help people address feelings of uncertainty and seek solutions.
Between issues related to body image, survivor’s guilt, and aging, many long-term survivors may become isolated. Even those who are not isolated may be challenged by divisions along HIV-diagnosis lines (although with the onset of PrEP—pills taken by people without HIV to decrease risk—and continued research showing effective treatment to reduce the risk of transmission, these divisions are lessening). Long-term survivors coping with isolation may find therapy helpful for both confronting this issue and developing strategies to both address causes of isolation and confront it.
Other symptoms that may emerge for consideration in clinical settings include anxiety, depression, self-destructive/risk-taking behavior, suicidality, sleep issues/nightmares, and a sense of hopelessness. Therapists working with this population should take into account whether these symptoms are related to the diagnosis of HIV or developed independently, rather than assuming all emotional or psychological symptoms to be related to diagnosis.
While in years past the population of over-50 long-term HIV survivors may have not been extensively studied, and may have been somewhat underserved due to lack of knowledge, new research is emerging and changing the outlook for this community. This area of work is still emerging, however, and as new institutional and social supports are developed, mental health professionals can play an important role by listening to the narratives of those seeking treatment and helping these individuals cope with the range of issues they face, in relation to their HIV status, as they find themselves with a greater lifespan than they expected.