Metaphors and Representations of Systemic Lupus Erythematosus: Comment on the Article by Sutanto et al


We read with great interest the article by Sutanto and colleagues published recently in Arthritis Care & Research ([1]). The article was a systematic review and thematic synthesis of 46 qualitative studies that explored the experiences of adults living with systemic lupus erythematosus (SLE). This contribution is cohesive with approaches that emphasize the usefulness of synthesizing qualitative research to overcome some of the limits of single qualitative studies, bridging the gap between research and practice in health disciplines ([2]).

However, in qualitative research and reviews, findings strictly depend on the researchers' perspectives and questions ([3]). In this regard, from a social psychology perspective, we suggest that an interesting point of view for considering the growing corpus of qualitative studies is the social representation theory ([4, 5]), with a specific focus on metaphors that patients adopt to describe their condition. In simple terms, the purpose of all representations is to make something unfamiliar familiar, and metaphors are functional to this process ([6]). This is mostly important for serious and complex conditions, where the challenge for clinicians is to provide clear information, and the challenge for patients is to make sense of such a largely unpredictable and fluctuating disease.

In an extensive literature review, we identified the 3 main metaphors used by professionals to describe lupus-related diseases: the wolf, the monster Hydra, and the butterfly, each of which emphasizes specific disease aspects and manifestations. Regarding the wolf, the term lupus (Latin for wolf) is attributed to the thirteenth century physician Rogerius, who used the term to describe erosive facial lesions that were reminiscent of a bite from a wolf (i.e., canis lupus) ([7]). This metaphor emphasizes the skin involvement and appears functional to describe a quite severe disease. The second metaphor, the monster Hydra, derives from ancient Greek mythology ([8]). This frightening beast had an uncertain number of heads, and stories indicated that cutting off 1 head led to the growth of 2 others. Analogous with the Hydra, SLE can present itself in a multitude of guises, which are usually intermittently active ([9]). The successful treatment of 1 manifestation, such as arthritis, may be followed by the emergence of other clinical features, such as renal disease or skin rash ([10]). The third metaphor of the butterfly symbolizes the symmetric malar erythema reaction seen most often in the context of active SLE ([11]).

However, the professionals' perspective represents just half of the picture; which common representations of the disease are shared by patients? Are these representations related to a wild beast they can fight (like the wolf), an unbeatable, terrifying monster (like the Hydra), or a peaceful animal to live with (like the butterfly)? We suggest that future reviews of qualitative studies with SLE patients will be able to answer more specific questions, clarifying the use of representations in the light of illness severity, coping strategies, and acceptance of the disease. This kind of research will help clinicians in providing useful information to patients, but avoiding distressing or frightening disease representations ([12-14]).