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.
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Disclosure statement
No potential conflict of interest was reported by the author(s).