Objectives: Individuals with a disfigurement are at risk of experiencing psychological distress, but the level of this distress is only marginally associated with clinical severity. This study examines the experience of living with the skin condition vitiligo with a view towards understanding its impact and the ways in which participants deal with this chronic and disfiguring disease.
Design: The qualitative method Interpretative Phenomenological Analysis was used.
Methods: In a semi-structured interview, seven white female vitiligo sufferers were asked to describe their experiences from the time the vitiligo first became apparent to the time of the interview. They were encouraged to elaborate on their own reactions and how they dealt with the reactions of others.
Results: Initially, participants felt overwhelmed by their illness but over time they developed several strategies in order to 'contain' their difference in appearance within manageable limits. The behavioural strategies of avoidance and concealment had several disadvantages, whereas cognitive strategies were less problematic but difficult to sustain consistently. Social support served to facilitate the development of coping methods associated with acceptance of difference. However, maintaining this acceptance was a struggle and the process fragile.
Conclusions: Living with vitiligo was a continuous struggle. The results are consistent with Leventhal's (1970) notion that coping is a problem-solving process and with Moos and Schaefer's (1984) contention that dealing with a chronic disease involves the development of a variety of strategies in order to regain equilibrium. Further research is needed to examine whether the experiences described here are common to other disfiguring conditions.