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‘Concealing the Evidence’: The Importance of Appearance Concerns for Patients with Systemic Lupus Erythematosus

Department of Rheumatology, Dudley Group of Hospitals NHS Trust, Dudley, UK, liz-hale{at}supanet.com

GJ Treharne

School of Psychology, University of Birmingham, Birmingham, UK, Department of Rheumatology, Dudley Group of Hospitals NHS Trust, Dudley, UK

Y Norton

LUPUS UK, West Midlands Branch, Coseley, UK

AC Lyons

School of Psychology, Massey University, Auckland, New Zealand

KMJ Douglas

Department of Rheumatology, Dudley Group of Hospitals NHS Trust, Dudley, UK

N Erb

Department of Rheumatology, Dudley Group of Hospitals NHS Trust, Dudley, UK

GD Kitas

Department of Rheumatology, Dudley Group of Hospitals NHS Trust, Dudley, UK, School of Psychology, University of Birmingham, Birmingham, UK, Department of Rheumatology, Division of Immunity and Infection, School of Medicine, University of Birmingham, Birmingham, UK

Outwardly visible signs associated with systemic lupus erythematosus (SLE) can include facial rashes, alopecia and weight gain. We sought to understand the concerns of SLE patients about their appearance and the recognition of this by healthcare professionals. Semi-structured interviews were carried out with 10 women aged 26-68 years diagnosed with SLE for one to 12 years. Data were analysed with Interpretative Phenomenological Analysis (IPA); this seeks to describe and provide understanding of people’s experience of a phenomenon by studying in-depth a small number from a relatively homogeneous group (women with SLE in the present study). Analysis revealed three themes concerning appearance issues. Participants described public self-consciousness after the onset of SLE. Cosmetics and clothing were used skilfully to appear ‘normal’, hide the ‘self’ and assert control but could increase feelings of difference and isolation. Self-imposed isolation was also described and may relate to depression. The understanding of family, friends, colleagues and healthcare providers was also important. Awareness of the psychosocial concerns of SLE patients with life-changing skin disease may enable multidisciplinary healthcare teams to offer a more sensitive, practical service. The physical and emotional needs of SLE patients need to be ascertained and appropriate educational and psychological services are required.

Key Words: appearance • Interpretative Phenomenological Analysis • qualitative • self-consciousness • systemic lupus erythematosus

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