Sources of emotional distress associated with diarrhea among late middle-age and older HIV-infected adults.

contextAlthough the experience of physical symptoms can adversely influence emotional well-being, the specific emotional reactions experienced in response to specific symptoms are not well understood.

objectivesTo examine the emotional impact of diarrhea among HIV+ late middle-age and older adults (i.e., age 50 years and older).

methodsIn-depth interviews were conducted with 100 participants, of whom 29 had experienced diarrhea and spoke about the emotional impact it had had on them.

resultsThree principal themes emerged: 1) I don't control the diarrhea, the diarrhea controls me; 2) I feel ashamed, dirty, and tainted; and 3) I fear what the diarrhea is doing to me and what it means. Their inability to control when and where their diarrhea would occur was a great source of emotional distress for participants. Almost all feared the possibility of fecal incontinence while out in public and the humiliation it would bring. To avoid this, many greatly restricted their time outside the home or where they would go to ensure access to a restroom. Others felt shame and perpetually "dirty" even when not dealing with a bout of diarrhea. Many also worried about the effect the diarrhea would have on their health and whether it signaled progression to end-stage disease.

conclusionThe data strongly support the need to aggressively manage diarrhea in HIV-infected adults, as the social and emotional consequences can be profound. When it cannot be effectively controlled, physicians and social service agencies should address the isolation by providing home-based opportunities for social support and interaction.