University of Hull, UK.
Health (London). 2019 Jan;23(1):97-113. doi: 10.1177/1363459317739436. Epub 2017 Nov 1.
The experience of living with HIV, in the global north, has changed significantly over the past 20 years. This is largely the result of effective biomedical methods of treatment and prevention. HIV is now widely considered to be a long-term condition like many others - it has been argued that HIV has been 'normalised'. Drawing on online qualitative survey data, with respondents aged 18-35 years, diagnosed with HIV in the past 5 years, this research explores contemporary subjective experiences of being diagnosed, and living, with HIV in the United Kingdom. The data reveal ambiguous experiences and expectations, as the 'normative' status of HIV exists alongside ongoing experiences of fear, shame and stigma - maintaining its status as the most 'social' of diseases. In rendering HIV 'everyday', the space to articulate (and experience) the 'difference' which attaches to the virus has contracted, making it difficult to express ambivalence and fear in the face of a positive, largely biomedical, discourse. In this article, the concepts of normalisation and chronicity provide an analytical framework through which to explore the complexity of the 'sick role' and 'illness work' in HIV.
在过去的 20 年里，全球北方的艾滋病毒感染者的生活经历发生了重大变化。这在很大程度上是由于有效的生物医学治疗和预防方法。现在，艾滋病毒被广泛认为是一种像许多其他疾病一样的长期疾病——有人认为艾滋病毒已经“正常化”。本研究利用过去 5 年内被诊断出患有艾滋病毒、年龄在 18 至 35 岁之间的在线定性调查数据，探讨了英国当代艾滋病毒感染者的诊断和生活的主观体验。数据揭示了模糊的体验和期望，因为艾滋病毒的“规范性”地位与持续的恐惧、羞耻和污名化的经历并存——维持了其作为最“社会性”疾病的地位。通过将 HIV 变得“日常化”，表达（和体验）与病毒相关的“差异”的空间已经缩小，这使得在面对积极的、主要是生物医学的话语时，难以表达矛盾和恐惧。在本文中，正常化和慢性化的概念为探索 HIV 中的“患病角色”和“疾病工作”的复杂性提供了一个分析框架。
