The experiences of people with an intersex condition: a journey from silence to voice

Abstract

The aim of this research was to explore the experiences of people with intersex conditions. The main objective was to contribute to knowledge of the condition by giving voice to a group of people who are invisible in society. Medical management of intersex conditions has historically focused on erasing visual bodily difference through gender assignation and medical/surgical intervention to ensure congruent body appearance. People with intersex conditions require support to live free from shame in a normalising society and need particularly sensitive care when engaged with the health system. A small-scale qualitative study was undertaken. Recruitment of participants was difficult because of barriers created by invisibility and marginalisation. After extensive and careful negotiation with one contact, three people in New Zealand agreed to participate in the research. In-depth interviews were undertaken and thematic analysis used to develop themes that were common across participants' experiences. Three themes emerged from the data: managing silence, coping with difference and development of acceptance. These themes highlight: the negative impact of societal ignorance, lack of acceptance of body difference and the journey from silence to disclosure and acceptance of individuality and choice in gender identification. These findings highlight the need for nurses to be knowledgeable and skilled communicators to ensure age-appropriate information and support is provided to enable individual choice in gender identification and normalisation for people with intersex conditions. Many nurses will be unaware of the condition of being intersex and have little knowledge of the challenges faced by this group yet are likely to be involved in their care. People with intersex conditions require particularly sensitive care and nurses can provide appropriate, supportive and 'safe' care if they are aware of the condition and its challenges.