title: Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Psychology, University of Limerick, Limerick, Ireland.
authors.forename: Kirby A M
authors.initials: KA
authors.lastname: Brennan
authors.affiliation: Department of Psychology, University of Limerick, Limerick, Ireland. Ann-Marie.Creaven@ul.ie.|Centre for Social Issues Research, University of Limerick, Limerick, Ireland. Ann-Marie.Creaven@ul.ie.
authors.forename: Ann-Marie
authors.identifier: http://orcid.org/0000-0002-2467-307X
authors.initials: AM
authors.lastname: Creaven
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003695:Delivery of Health Care; D004644:Emotions; D005260:Female; D006296:Health Services; D006801:Humans; D007494:Ireland; D008180:Lupus Erythematosus, Systemic / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D011788:Quality of Life / Q000523:psychology*; D012657:Self-Help Groups; D012944:Social Support; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Illness; Lupus; Qualitative; Quality of life; Social support; Thematic analysis