Over the past two decades, the medical and psychosocial needs of people with human immunodeficiency virus (HIV) infection have changed considerably. The introduction of highly active antiretroviral therapy (HAART) has had a profound effect on the epidemic and the prognosis of people affected by HIV. Numerous studies have shown that HAART extends life expectancy, reduces significantly the progression of HIV-related illness, decreases HIV viral loads, and increases CD4 counts. However, the verdict is still out on whether the experience of living longer with HIV disease and its related illnesses is significantly less stressful today than before the introduction of HAART. It is the extension of life for many individuals treated with HAART that has defined HIV infection as a chronic illness. Even though many may feel healthier and are living longer, HAART is not without its problems. Furthermore, these very complex antiretroviral regimens are a constant reminder of one’s HIV status. Thus, inherent in living with HIV infection as a chronic illness is the coexistence of emotional and psychological reactions.

Psychological stress, demoralization, and distress are ubiquitous with chronic illness. The uncertainty regarding one’s future state of health, potential shortening of one’s life trajectory, unpredictability of physical discomfort or ailments, and the impact on the individual’s partner, spouse, and family are common sources of psychological stress in individuals with chronic illness. Studies of individuals facing grave illness have identified the key themes for maintaining emotional equilibrium to be a search for meaning, attempts to gain mastery or control over illness, and attempts to enhance self-worth. For many, the meaning and experience of having HIV disease remains difficult and challenging.

The passage of time and modern advances of medicine have not diminished the complexity of social and psychological issues that confront those living with HIV disease. The immediate psychological impact of learning one’s HIV seropositivity is frequently one of acute distress expressed as depressed mood, anxiety, shock, and anger. Sexual avoidance is not an
uncommon phenomenon, because patients may perceive sex as an activity that is associated with illness and death. These symptoms often take the form of transient and situational adjustment disorders. Seropositive individuals wonder if they can continue with their activities of daily living and responsibilities, including jobs and social relationships. Persons with HIV can become preoccupied with becoming ill and dying, as do persons with any life-threatening disease. Some confront the failure of antiretroviral or protease inhibitors, whereas others live apprehensively, wondering how long they will escape an opportunistic infection. In these situations, hopelessness is a prominent theme. The social impact of HIV infection can also be distressing. People living with HIV-related illness have been stigmatized since the epidemic began. Fear of stigma has interfered with disclosure of seropositive status to sexual partners, family, and friends. The shame imposed by societal beliefs (“they deserve their illness”) may adversely affect care-seeking behaviors and adherence to HAART. Furthermore, HAART may be a double-edge sword. On the one hand, it decreases mortality and morbidity, and on the other it produces disturbing physical side effects, including neuropathy, chronic diarrhea, fatigue, and lipodystrophy syndrome. This new treatment adds to the “stressor chest” of HIV infection. The additional impact of physical anguish on mental health can be significant.

The psychological distress linked with the social and physical pressures of HIV infection manifest in the form of depressive symptomatology, including heightened anxiety, worries, tension, perceived stress, and avoidant, intrusive, and overwhelming thoughts. The prevalence of these reactive symptoms has not been determined. Although these symptoms are usually mild and self-limiting, they can be severe and disabling to the extent that they may meet criteria for an adjustment disorder or another Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) Axis I diagnoses. HIV infection is also experiential because it is expressed emotionally as shame, guilt, grief, and numbness. An “emotional roller coaster” is often the core of one’s experience of living with HIV disease. These emotional responses may elicit maladaptive defense mechanisms, such as denial, regression, or isolation of affect.

Persons with HIV-related illness experience significant psychological and emotional vulnerabilities at each of the key milestones of its clinical course (HIV testing, notification of HIV seropositivity, development of HIV disease, diagnosis of acquired immunodeficiency syndrome [AIDS], development of cognitive dysfunction, progressive disability, and terminal deterioration). Even with the clear advantages of HAART treatment, current research does not, as of yet, support the notion that individuals transverse these clinical milestones with less psychological distress during the era of HAART.