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Fluctuation, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: results of an online survey

Walker, E; Price, E; Booth, S


S Booth


Sara Booth


© The Author(s) 2018. Objectives: Systemic lupus erythematosus (SLE) is associated with high levels of workplace disability and unemployment. The objective of this study was to understand the reasons for this and to describe the barriers and facilitators of employment identified by people with SLE to develop appropriate solutions. Unemployment, as well as unsuitable work, has adverse health outcomes. Methods: Adults with SLE completed a UK-specific online survey, through the LUPUS UK website, designed to find out more about the difficulties and successes that people with SLE have in maintaining employment. The survey was predominantly qualitative, to understand participants’ employment experiences to generate possible solutions. Results: Three hundred and ninety-three people gave detailed responses to the survey within eight weeks. Every respondent reported a detrimental effect of SLE on their ability to work: 40.45% had left employment because of it. The themes of concern to respondents were unambiguous: (i) the difficulties of working (and career damage) with SLE, (ii) fear and anxiety overshadowing work/family life, (iii) the greater potential to remain in some employment or stay in full employment when modifications of work pattern and support from management and colleagues were available. SLE-related fatigue, its invisibility and fluctuating nature were felt to be the main barriers to maintaining employment. Numerous respondents could work only part-time and anxiety was high regarding their future ability to continue working. Many had taken substantial pay reductions and refused offered promotions to preserve their health. Distress due to loss of work and the benefits it brings were reported by every respondent who had left work. Conclusion: SLE presents specific difficulties for maintaining employment – fatigue, fluctuation and invisibility – not addressed by current anti-discrimination legislation or currently available ‘reasonable adjustments’. This study demonstrates that (i) employment is an important area of concern for people with SLE, (ii) SLE has significant detrimental effects on individuals’ ability to participate and progress in employment, (iii) legislators and employers need information about SLE as invisibility and fluctuation cause hidden problems, and (iv) more data is needed to inform workplace adjustments if individual distress and societal loss of skills are to be addressed.


Walker, E., Price, E., & Booth, S. (2018). Fluctuation, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: results of an online survey. Lupus, 27(14), 2284-2291.

Journal Article Type Article
Acceptance Date Oct 2, 2018
Online Publication Date Nov 19, 2018
Publication Date Dec 1, 2018
Deposit Date Nov 5, 2018
Publicly Available Date Jan 3, 2019
Print ISSN 0961-2033
Electronic ISSN 1477-0962
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 27
Issue 14
Pages 2284-2291
Keywords SLE, employment, fluctuating, invisible, fatigue, barriers
Public URL
Publisher URL
Additional Information Received acceptance email from editor 2 October 2018


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This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (

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