August/September 2014 

HIV, survival and mental and emotional health

The HIV epidemic has always been associated with deeply emotional issues. In part this was caused by the way the new syndrome AIDS made its debut in high-income countries in the early 1980s—with reports of the sudden and mysterious onset of unusual life-threatening infections in previously health young men, many of whom were gay and bisexual. Cases also quickly appeared in people who injected street drugs and, later, in other populations. These affected communities—already deeply despised by larger society and, in the case of gay men, struggling to repeal legal restrictions on their rights—could hardly be expected to solve the problem of an emerging epidemic. The initial arrival of AIDS was met largely with silence from governments around the world, and communities affected by the new epidemic felt a deep sense of isolation and abandonment.

The seemingly inevitable association between AIDS and death, combined with initial uncertainty about precisely who was susceptible and exactly how the new syndrome was spread, were sufficiently disturbing to understandably cause a range of emotions in some people with AIDS—anxiety, fear, hopelessness and depression. The same fear triggered other feelings in some members of the public, such as panic, hysteria and hatred.

American physician Richard Glass who observed the impact of the arrival of the HIV pandemic proposed that “the intensity of emotional responses to AIDS may be at least partially due to its linkage with two of life’s most powerful experiences— sex and death.”

The initial response to AIDS by health authorities in 1980 and 1981 was at best indifferent compared to responses in that era to outbreaks of Legionnaires’ disease, toxic shock syndrome and other public health issues. This governmental and institutional indifference resulted in shock and anger that incited citizens to create the AIDS movement. This movement helped to mobilize communities and scientists to begin to find ways to deal with the health and research needs of people living with HIV.

Focus on the brain

In the mid-1980s scientists and doctors gained insight about HIV’s impact on the brain and it became likely that this virus could be responsible for the sometimes subtle, sometimes serious effects on this organ that were seen in HIV-positive people. The impact of this virus could result in changes in mood and personality, impaired memory and difficulty thinking clearly.

Massive change for the better

In 1996 powerful combinations of anti-HIV drugs (commonly called ART or HAART) became increasingly available in high-income countries and prospects for better health and survival with HIV improved tremendously. The power of ART is so profound that researchers estimate that a young adult who becomes HIV positive today and who begins treatment shortly thereafter and who is engaged in his/her care and who does not have unrecognized and/or untreated or poorly managed co-existing health issues (such as serious co-infections with liver-injuring germs, addiction, severe mental health and emotional issues) is expected to survive into his/her 80s.

The closet of mental and emotional health

Although ART is widely available in high-income countries and the overall risk of death from AIDS-related infections is greatly reduced, some HIV-positive people, even those adherent users whose CD4+ cell counts rise significantly, experience challenges to their emotional well-being. Many HIV-positive people who have survived the initial wave of AIDS in the 1980s and 1990s may still have unresolved issues, including the emotional toll exacted by witnessing the loss of friends and loved ones. Issues such as survivor guilt and post-traumatic stress disorder can occur. Furthermore, ART allows people to reach older age, a period when friendship networks can gradually dwindle, which can lead to loneliness and isolation that may trigger depression. HIV is still a stigmatized condition and this can place an additional psychological burden on people; not everyone can cope well with this without adequate support. Also, mental and emotional health issues are stigmatized in the larger society, so it may be difficult for affected HIV-positive people to recognize changes in their mental health or to even seek help to relieve the distress of emotional issues. HIV-positive people who use street drugs (injected or otherwise) also have unique mental health needs.


Research suggests that some women living with HIV today are at heightened risk for depression and anxiety. In some cases, the reasons for this are psychosocial and in other cases they are biological; in some cases, there is a mix of factors at play. Below are some examples:

Change for the better

Prospects for a long healthy life for people living with HIV have never been better. HIV-positive people (and people at high risk for HIV) need regular checkups and screening for mental health and emotional issues. Identifying such issues is a first step toward fortifying a person’s ability to understand, cope with and successfully triumph over some of the challenges that can occur in life.

In this TreatmentUpdate we continue to explore some issues related to the functioning of the brain as well as selected mental and emotional health issues that we reported on in TreatmentUpdate 203.

—Sean R. Hosein


HIV and Emotional Wellness – CATIE’s guide to how people with HIV can cultivate their emotional well-being

Canadian Mental Health Association

Strengthening the aging brainTreatmentUpdate

Good for the brain—advice from neuroscientistsTreatmentUpdate


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