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. 2022 Jul 22;10(1):579-595.
doi: 10.1080/21642850.2022.2102018. eCollection 2022.

'It was Supposed to be a Secret': a study of disclosure and stigma as experienced by adults with differences of sex development

Line Merete Mediå  1   2 , Lena Fauske  2   3 , Solrun Sigurdardottir  1 , Kristin J Billaud Feragen  1 , Charlotte Heggeli  1   4 , Anne Wæhre  5
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'It was Supposed to be a Secret': a study of disclosure and stigma as experienced by adults with differences of sex development

Line Merete Mediå et al. Health Psychol Behav Med. .

Abstract

Background: Differences of sex development (DSD) are a group of congenital conditions that involve variations in sex chromosomes, genes, external and/or internal genitalia, hormones, and secondary sex characteristics. The present study sought to highlight the everyday challenges faced by adults with DSD as well as to understand how issues such as disclosure, information sharing, and stigma affect their daily life.

Method: We applied an interpretative phenomenological study design to explore the first-person perspectives. Semi-structured qualitative interviews of 15 adults aged 30-70 years living in Norway with five different DSD conditions (Turner syndrome, Klinefelter syndrome, congenital adrenal hyperplasia, Mayer-Rokitansky-Küster-Hauser syndrome and hypospadias) were analyzed using reflexive thematic analysis.

Results: Living with DSD, indicated doing a balancing act between hiding and/or exposing what participants perceived differed from others bodies. Communication regarding sensitive topics proved to be important. The participants were doing invisible work to manage the balance between concealing and revealing their feeling of differentness, a work effort that was not necessarily perceivable to others but still affected everyday life of the participants. Furthermore, the participants' experiences of disclosure changed over time, as those who were diagnosed during childhood found that disclosure became easier with advancing age. However, being diagnosed as an adult seemed to increase the feeling of difference and complicate disclosure.

Conclusion: Individuals with DSD should receive adequate information and have someone to practice disclosure towards, which could possibly strengthen the psychosocial aspects of living with their condition. The results emphasize the need to help individuals with DSD achieve a balance between disclosure and self-protection, overcome stigma, and determine when and how information about their DSD should be provided to others.

Keywords: Conceal; differences of sex development; disclosure; disorder of sex development; intersex; stigma.

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Conflict of interest statement

No potential conflict of interest was reported by the author(s).

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References

    1. Alderson, J., Madill, A., & Balen, A. (2004). Fear of devaluation: Understanding the experience of intersexed women with androgen insensitivity syndrome. British Journal of Health Psychology, 9(1), 81–100. doi:10.1348/135910704322778740 - DOI - PubMed
    1. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi:10.1191/1478088706qp063oa - DOI
    1. Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. doi:10.1080/2159676X.2019.1628806 - DOI
    1. Chelvanayagam, S. (2014). Stigma, taboos, and altered bowel function. Gastrointestinal Nursing, 12(1), 16–22.
    1. Cools, M., Nordenstrom, A., Robeva, R., Hall, J., Westerveld, P., Fluck, C., … Pasterski, V. (2018). Caring for individuals with a difference of sex development (DSD): A consensus statement. Nature Reviews Endocrinology, 14(7), 415–429. doi:10.1038/s41574-018-0010-8 - DOI - PMC - PubMed

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