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

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Abstract

Purpose

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.

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Acknowledgments

The authors gratefully acknowledge the contribution of all respondents to this survey. The authors also thank Lupus Group Ireland and Lupus UK for their assistance in participant recruitment.

Author information

Authors and Affiliations

  1. Department of Psychology, University of Limerick, Limerick, Ireland

    Kirby A. M. Brennan & Ann-Marie Creaven

  2. Centre for Social Issues Research, University of Limerick, Limerick, Ireland

    Ann-Marie Creaven

Authors
  1. Kirby A. M. Brennan
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  2. Ann-Marie Creaven
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Corresponding author

Correspondence to Ann-Marie Creaven.

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Conflict of interest

The authors have no conflict of interest. This study was conducted in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.

Funding

This research received no specific Grant from any funding agency in the public, commercial, or not-for-profit sectors.

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Brennan, K.A.M., Creaven, AM. Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus. Qual Life Res 25, 1227–1235 (2016). https://doi.org/10.1007/s11136-015-1151-z

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  • DOI: https://doi.org/10.1007/s11136-015-1151-z

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