Abstract
This article explores the experiences of people living with fluctuating long-term conditions, with a particular focus on the UK welfare benefits system. Respondents in this study suggested that this system constitutes a critical barrier to maintaining a positive work-based identity, being characterised by assessment and decision-making processes that are inappropriately focused and inflexibly implemented. Here, we report the findings from a cross sectional online study of people aged 18 to 75+, resident in the UK, with a self-reported diagnosis of lupus, arguably, the archetypal fluctuating condition. We explore some of the key themes respondents living with lupus identified in the context of striving to maintain a sense of themselves as productive and functional citizens. We conclude that there is a critical lack of attention afforded to the experience of fluctuating illness within the State benefits system and offer some strategies for better understanding, and addressing, this issue.
Disclosure statement
No potential conflict of interest was reported by the author(s).