Vital scientific puzzle or lived uncertainty? Professional and lived approaches to the uncertainties of ageing with HIV

Abstract

The ageing of the HIV population is unfolding within the context of a politicised history of medical care, medical breakthroughs changing HIV from a fatal to a chronic illness, and a long-standing treatment partnership between medical professionals and HIV patients. This article draws on in-depth interviews with those living with HIV in later life (aged 50 and over), as well as those working with them, to uncover how these various actors understand the nature and consequences of this new phenomenon, and whether their understandings and approaches vary according to the individual’s connection to it. All informants described the interaction between ageing and HIV as complex and incompletely understood, and accounted for their own uncertainties about this interplay as due to a global knowledge gap produced by the novelty of ageing with HIV. In these data, working in the area of, or being personally affected by, ageing with HIV emerged as ‘experiments in living, ’ with those variously involved in the phenomenon forced to take tentative, exploratory steps while navigating ‘uncharted territory.’ Yet, the poorly-understood nature of the ageing/HIV interplay was framed differently, with clinicians and scientists constructing it as a temporary gap in technical knowledge (a scientific puzzle), and non-medical stakeholders and older people living with HIV describing it as an anxiety-provoking source of chronic uncertainty permeating daily life. These differences and similarities can help us to reformulate what medical sociology has often constructed as a static ‘gulf’ between the clinical and the lifeworlds as, instead, gravitational pulls towards clinical and experiential dimensions of chronic illness as it unfolds in later life.

Keywords:

• HIV
• ageing
• chronic illness
• uncertainty
• sociology
• lay and medical knowledge
• lived experience
• accounts