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Feeling the benefit : fluctuating illness and the world of welfare

Price, Elizabeth; Walker, Liz; Booth, Sara


Sara Booth


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.


Price, E., Walker, L., & Booth, S. (2020). Feeling the benefit : fluctuating illness and the world of welfare. Disability and society, 35(8), 1315-1336.

Journal Article Type Article
Acceptance Date Sep 23, 2019
Online Publication Date Oct 31, 2019
Publication Date Sep 13, 2020
Deposit Date Dec 9, 2019
Publicly Available Date Oct 27, 2022
Journal Disability and Society
Print ISSN 0968-7599
Electronic ISSN 1360-0508
Publisher Taylor and Francis
Peer Reviewed Peer Reviewed
Volume 35
Issue 8
Pages 1315-1336
Keywords Lupus; Fluctuation; Welfare benefits; Work-based identity
Public URL
Publisher URL
Additional Information Received: 2019-01-25; Revised: 2019-08-06; Accepted: 2019-09-23; Published: 2019-10-31


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