Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus

Because symptoms are not immediately visible to others, systemic lupus erythematosus (SLE) is often considered an invisible illness. This invisibility can reduce the social support received from network members and adversely affect the quality of life. In the light of this, social support from formal support groups and from medical professionals can be particularly important; however, literature examining support from these sources is scarce. The purpose of this study was to explore the nature and impact of social support from medical professionals and from support groups for individuals with SLE.

Participants responded to open-ended questions on an online survey administered by Lupus UK and Lupus Group Ireland. Qualitative data from 133 participants (77 % of respondents) were analysed.

Thematic analysis revealed three overarching themes: invisibility, inadequate care, and validation. Respondents felt that their SLE was invisible to social ties and to medical professionals. In addition, treatment and organisational factors in health care contributed to the sense of inadequate care. Finally, validation was derived from informational and emotional support from both support groups, and from some medical professionals.

The findings suggest that individuals with SLE have mixed experiences in terms of contact with medical professionals and involvement with support groups. Furthermore, low public awareness of lupus appears to contribute to feelings of invisibility for patients, leading to loneliness and isolation. Medical professionals might benefit from skills training in terms of managing the psychosocial consequences of lupus.