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]).

  • 1
    Sutanto B, Singh-Grewal D, McNeil HP, O'Neill S, Craig JC, Jones J, et al.Experiences and perspectives of adults living with systemic lupus erythematosus: thematic synthesis of qualitative studies.Arthritis Care Res (Hoboken)2013;65:175265.
  • 2
    Sandelowski M, Barroso J.Handbook for synthesizing qualitative research.New York:Springer;2007.
  • 3
    Hale ED, Treharne GJ, Kitas GD.Qualitative methodologies I: asking research questions with reflexive insight.Musculoskeletal Care2007;5:13947.
  • 4
    Moscovici S. The phenomenon of social representations. In: Farr RM, Moscovici S, editors.Social representations.Cambridge:Cambridge University Press;1984. p.370.
  • 5
    Asbring P.Words about body and soul: social representations relating to health and illness.J Health Psychol2012;17:111020.
  • 6
    Lakoff G. The contemporary theory of metaphor. In: Ortony A, editor.Metaphor and thought.Cambridge:Cambridge University Press;1993. p.20252.
  • 7
    Lahita RG. Introduction. In: Lahita RG, editor.Systemic lupus erythematosus.New York:John Wiley and Sons;1987. p.13.
  • 8
    Tucker LB, Menon S, Isenberg DA.Systemic lupus in children: daughter of the Hydra? [editorial].Lupus1995;4:835.
  • 9
    Isenberg DA, Horsfall AC. Systemic lupus erythematosus: adult onset. In: Maddison PJ, Isenberg DA, Woo P, Glass DN, editors.Oxford textbook of rheumatology.New York:Oxford University Press;1993. p.73355.
  • 10
    Sturfelt G, Nived O.Instruments to measure disease activity in systemic lupus erythematosus: is our net tight enough to catch the Hydra? [editorial].J Rheumatol2011;38:34.
  • 11
    Sontheimer RD.The lexicon of cutaneous lupus erythematosus: a review and personal perspective on the nomenclature and classification of the cutaneous manifestations of lupus erythematosus.Lupus1997;6:8495.
  • 12
    Hale ED, Treharne GJ, Lyons AC, Norton Y, Mole S, Mitton DL, et al.“Joining the dots” for patients with systemic lupus erythematosus: personal perspectives of health care from a qualitative study.Ann Rheum Dis2006;65:5859.
  • 13
    Waldron N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C.‘It's more scary not to know’: a qualitative study exploring the information needs of patients with systemic lupus erythematosus at the time of diagnosis.Musculoskeletal Care2011;9:22838.
  • 14
    Miles A.Of butterflies and wolves: enacting lupus transformations on the internet.Anthropol Med2009;16:112.