Objective: Little is yet known about the interactions between body image, self-image, medication use and adherence to medication in people with SLE. Using a qualitative mode of enquiry, we sought to understand these experiences within a group of patients diagnosed with SLE.
Methods: Fifteen participants (14 female, 1 male) with SLE took part in semi-structured interviews. Their ages ranged from 22 to 57 years and disease duration ranged from 3 to 20 years. Interviews were audio recorded and transcribed verbatim. Data were analysed using interpretative phenomenological analysis.
Results: Analysis revealed four themes that are presented set within the overarching concept of body and self-image: the road to diagnosis, communication and treatment concordance, living with the medication and self-image-faking it. Narratives revealed significant dissatisfaction with body image, an externally located concept. Worries about appearance and weight were most commonly mentioned and were often related to steroid use. Creative non-compliance with medication was frequently described and greater concordant relationships with physicians desired. Overall, participants sought increased investment in self-image, an internally located concept.
Conclusion: Body and self-image are important issues for individuals with SLE. Yet participants in our study generally felt that their health care providers did not give enough consideration to their concerns over the outward appearance effects of both the disease and its treatment.
Keywords: body image; medication side effects; physician–patient communication; qualitative research; self-image; systemic lupus erythematosus.
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