Living With HIV Disease
Sheryl L. Catz Jeffrey A. Kelly
Medical College of Wisconsin
The first cases of AIDS were identified in the United States nearly two decades ago. Many characteristics of AIDS quickly set the disease apart from other illnesses. One was the early association of AIDS with casual sex, and with homosexual behavior in particular. Initially and briefly known as “gay-related infectious disease” (GRID), AIDS appeared as a disease carrying unique stigma related to homosexuality, drug use, and other lifestyle issues that elicit social disapproval. Although other sexually transmitted diseases (STDs) have long been known, few are as fatal and there is little modern precedent-other than syphilis in the era before antibiotics- for a debilitating, incurable, fatal sexually transmitted infection. Especially in the AIDS epidemic's early years, there were widespread fears (bordering at times on hysteria) concerning possible disease transmission during everyday social contact. Although much has changed in public understanding of AIDS and in attitudes toward persons with the disease, these changes are not universal and AIDS still carries considerable stigma.
There has also been a steady progression in scientific and medical knowledge about AIDS and in progress toward more effective treatments for the disease. Two of the early benchmarks in this progression were the identification of human immunodeficiency virus (HIV) infection as the agent responsible for the illness and a reconceptualization of the disease process away from its focus on AIDS alone and toward a larger spectrum of HIV-related conditions. As the pathogenesis of HIV-related disease became better known, treatment advances have also occurred and, in recent years, have dramatically advanced. Although AIDS continues to take many lives, new treatments hold out the promise of longer and healthier life for some persons with HIV disease.
Kobayashi (1997) pointed out that the psychosocial and coping issues that confront people living with HIV/AIDS have changed throughout the history of the disease, in large part related to the evolution of treatments for HIV/AIDS. From a point early in the AIDS epidemic when the disease was seen as invariably fatal and effective treatment did not exist, HIV medical care has evolved to the point where both patients and health care providers can now approach disease management from at least a guardedly optimistic perspective. These treatment advances have also influenced the psychological coping issues faced by persons living with HIV. Psychological interventions remain critical for helping patients cope with the ramifications of HIV disease and benefiting from new treatments, as they have throughout the history of AIDS. However, and in parallel with HIV medical care advances, the psychological needs of persons with HIV are different than earlier in the AIDS epidemic.
This chapter describes psychological issues raised by HIV treatment advances. This discussion focuses on mental health and health behavior aspects of HIV disease, and on the interplay between medical advances and psychological care needs. Attention is especially focused in four areas: potential adjustment and coping challenges faced by persons living with HIV in this era of new HIV medical advances, issues related to patient adherence to new HIV treatment regimens, sexual or drug use risk behavior among HIV-seropositive and seronegative persons, and the emerging nature of HIV as a serious, chronic, but often manageable disease.