Intersex lived experience: trauma and posttraumatic growth in narratives

Abstract

ABSTRACT Intersex people have diverse bodies and identities but are unified by experiences of pathologisation, enduring human rights violations, stigmatisation, and mental health issues stemming from shame and secrecy. Medical interventions aimed at mitigating inferred psychosocial or parental distress occur without substantial evidence of their benefit and have been found to be themselves, stigmatising. Medically unnecessary and non-consensual interventions have been identified as human rights violations. Access to psychosocial and peer support for intersex people has been inconsistently facilitated by clinical multidisciplinary teams and intersex people are at danger of epistemic injustice in healthcare settings. A manuscript of 26 collated narratives written and illustrated by people aged 18–87 with intersex lived experience (N = 17) was examined using Interpretative Phenomenological Analysis. Four superordinate and 13 constituent themes emerged describing experiences of trauma and posttraumatic growth. Narratives depicted how experiences of systematic pathologisation of intersex bodies were negatively internalised and affected sense of self, family function, and social agency. Posttraumatic growth was facilitated through overcoming epistemic injustice, developing self-acceptance and increasing social connection. The findings are discussed in terms of posttraumatic growth and their implication for development of affirmative healthcare services for intersex people and the importance of psychosocial support as a primary intervention.