'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; Lena Fauske; Solrun Sigurdardottir; Kristin J Billaud Feragen; Charlotte Heggeli; Anne Wæhre

doi:10.1080/21642850.2022.2102018

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

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

Authors

Line Merete Mediå^{1

2}, Lena Fauske^{2

3}, Solrun Sigurdardottir¹, Kristin J Billaud Feragen¹, Charlotte Heggeli^{1

4}, Anne Wæhre⁵

Affiliations

¹ Women and Children's Division, Centre for Rare Disorders, Oslo University Hospital, Oslo, Norway.
² Department of Interdisciplinary Health Sciences, Institute of Health and Society, University of Oslo, Oslo, Norway.
³ Department of Oncology, Norwegian Radium Hospital, Oslo University Hospital, Oslo, Norway.
⁴ Educational Psychology Service, Tonsberg Municipality, Tonsberg, Norway.
⁵ Department of Child and Adolescent Psychiatry, Oslo University Hospital and Institute of Clinical Medicine, Oslo, Norway.

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.

Grants and funding

This project was funded by the EkstraStiftelsen Helse og Rehabilitering (Stiftelsen Dam) in Norway [grant number: 2020/FO299085].