People living with HTLV: meanings of the illness, experience of illness and its relationship with work

Abstract

It is estimated that 2.5 million people are infected with the human T-cell lymphotro-pic virus (HTLV) in Brazil, mainly among afro-descendant populations with low socioeconomic status. The article presents results of the research that aimed to understand the illness experience of people living with HTLV, the ways of going about life and the relationships with work. Thirty-one semi-structured interviews were conducted with frequenters of an infectious diseases research ins-titute. The oral narratives constituted the corpus that was analyzed using Sketch Engine software. Discourse analysis used references from Social Sciences, with emphasis on the health-work rela-tionship. The manifestations of HTLV cause func-tional impairment and affect living standards, with repercussions on formal, informal, and do-mestic work. The narratives revealed complaints of physical symptoms and other health-related problems, in addition to prejudice, lack of family support and significant repercussions on work, namely issues aggravated by the absence of public policies aimed at people living with HTLV. The material, symbolic and subjective conditions cau-sed by the progressive loss of physical capacity and early retirement affect not only the physical sphe-re, but also the psychic and social areas.