Understanding "post-AIDS survivor syndrome": a record of personal experiences

With the introduction of protease inhibitors and combination therapies, and the dramatic health improvements related to these drugs, psychologists expected to see dramatic improvement in HIV-infected persons with regard to their feelings of hopelessness and depression. Several months after the Vancouver conference in 1996, a curious phenomenon was noted. The clinical manifestations included an initial phase of excitement and hope. Then, as patients began to deal with the psychological changes involved in planning a future rather than a funeral, many began (unconsciously or not) to become noncompliant with their medications. In Dallas, physicians validated this phenomenon, some reporting up to 75% non-compliance rates. This article will address the change from a terminally ill person to one that is chronically ill, and the psychological, social, and existential changes that occur during this shift in identity. It will specifically focus on the fears involved with losing support, disability income, having to possibly reenter the work force (after having not worked and losing job skills), the special issues of women with HIV and, finally, the decision that women are making to get pregnant, expecting a normal life span, and, (with the use of multiple drug therapies during pregnancy) having a healthy, noninfected child.