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

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.

Challenges in Transition of Care for People with Variations in Sex Characteristics in the European Context

“…The latter is largely missing in the transition to adult care, as almost all the participants mentioned it in the focus groups, even though the research on transition of care emphasizes the importance of psychosocial services in the transition of care [20]. This finding is all the more striking and makes the push for psychosocial support in the adult care vital, since the literature on quality of life in adult people with VSCs reveals that they experience a range of serious health issues, such as depression, anxiety, and suicidality [24,44,45], in comparison to the general population; feel stigma around their bodies and sexualities [46][47][48]; and age in poor psychosocial conditions [24]. Even though the rights of children did not feature prominently in the discussion, they were in the background as a position, because the participants highlighted the importance of child-oriented care and the time and resources dedicated to pediatric care.…”

‘I'm still a woman’: A qualitative study on sexuality in heterosexual women with Turner Syndrome

“…However, this leads to jealousy and a fear of being left (Lin et al, 2019). Participants have told us that obesity, physical (Thompson et al, 2020), hearing, dermatological or gynaecological problems have a negative impact on their sexuality (Mediå et al, 2022). In general, they feel more comfortable in structured families with clear roles, which helps them trust their partners more (Fjermestad et al, 2016).…”

Challenges in Transition of Care for People With Variations of Sex Characteristics in the European Context

“…The latter is largely missing in the transition to adult care, as almost all the participants mentioned it in the focus groups, even though the research on of care emphasizes the importance of psychosocial services in the transition of care [20]. This finding is all the more striking and makes the push for psychosocial support in the adult care vital, since the literature on quality of life in adult people with VSCs reveals that they experience a range of serious health issues, such as depression, anxiety, and suicidality [24,44,45], in comparison to the general population; feel stigma around their bodies and sexualities [46][47][48]; and age in poor psychosocial conditions [24]. Even though the rights of children did not feature prominently in the discussion, they were in the background as a position, because the participants highlighted the importance of child-oriented care and the time and resources dedicated to pediatric care.…”