Lupus (2006) 15, 532–540 www.lupus-journal.com © 2006 SAGE Publications 10.1191/0961203306lu2310xx ‘Concealing the evidence’: the importance of appearance concerns for patients with systemic lupus erythematosus ED Hale 1 *, GJ Treharne 2,1 , Y Norton 3 , AC Lyons 4 , KMJ Douglas 1 , N Erb 1 and GD Kitas 1,2,5 1 Department of Rheumatology, Dudley Group of Hospitals NHS Trust, Dudley, UK; 2 School of Psychology, University of Birmingham, Birmingham, UK; 3 LUPUS UK, West Midlands Branch, Coseley, UK; 4 School of Psychology, Massey University,Auckland, New Zealand; and 5 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. Lupus (2006) 15, 532–540. Key words: appearance; Interpretative Phenomenological Analysis; qualitative; self-consciousness; systemic lupus erythematosus CONCISE REPORT Introduction Systemic lupus erythematosus (SLE) is one of the more outwardly visible of the autoimmune diseases although many of the symptoms of SLE may not be immediately apparent on presentation. 1 Joint swelling and alopecia may be observable and mild to severe rashes may appear on the face and body spontaneously or after exposure to sunlight. 2 Permanent scarring and loss of pigmentation may occur, and patients may be referred to specialist nurses to learn about ‘cos- metic camouflage’. 3 Functional impairment caused by SLE and use of steroids can lead to weight gain. 4 Considerable psychological and social adjustment is required to be able to adapt to such a highly visible, unpredictable and fluctuating disease. 5,6 People with chronic health problems resulting in observable physical changes, like SLE, may experi- ence difficulties with their body image and socially perceived attractiveness. In modern society, attractive- ness (or lack of it) carries a value judgement. Attractive people, particularly women, are believed to possess more desirable traits such as intelligence, sociability, good character, mental health and secure jobs. 7 Conversely, women who are not perceived as stereo- typically attractive may suffer repeated rejection and discrimination leading to feelings of stigmatization and social withdrawal. 8 Body image in SLE has received scant attention, but appears to be worse in people with this disease than healthy individ- uals or people with rheumatoid arthritis (RA). 9 Studies in other rheumatic diseases highlight the importance of understanding patients’ appearance concerns. 10–13 ‘Body image’ is not consistently defined, but the tra- ditional approach has been to view the physical body from the perspective of the individual. However, it might be more useful to view body image from the per- spective of another. Linked to the concept of body *Correspondence: ED Hale, Research Fellow, Department of Rheumatology, Ward A1, Russells Hall Hospital, Dudley,West Midlands, DY1 2HQ, UK. E-mail:liz-hale@supanet.com Received 19 October 2005; accepted 23 February 2006