Relationships, Sexuality, Gender Identity, Gender Roles, and Self-Concept of Individuals Who Have Congenital Adrenal Hyperplasia: A Qualitative Investigation

ABSTRACT

The literature is unclear regarding the appropriate medical and psychological treatment of intersexuality: people who have genital, gonadal, or chromosomal characteristics that are neither all female nor all male. Medical and psychosocial management of such individuals is being reevaluated. Congenital adrenal hyperplasia (CAH), the most common cause of intersexual development among genetic females, is an inherited disorder that leads to varying degrees of masculinization of the external genitalia while internal genitals (ovaries, Fallopian tubes, and uterus) are typically female.

The purpose of this study was to explore self-perceptions of adult women who have CAH and the impact of the condition on their relationships, sexuality, gender identity, gender roles, and self-concept. In addition, their perceptions of medical treatment were examined. Five women with CAH chose to participate. Participants reported: (a) a sense of isolation and embarrassment about sharing information concerning their condition with others; (b) discomfort and embarrassment about certain aspects of their medical treatment; and (c) varying experiences and perceptions of their gender identity and gender roles. Recommendations are provided to assist psychotherapists in their work with people who have intersex conditions and their families.

KEYWORDS:

• Congenital adrenal hyperplasia
• sexuality
• gender
• gender role
• gender identity
• genetics
• intersexuality
• medical treatment
• psychoeducation
• psychotherapy
• self-concept
• sex assignment
• sexuality
• sexual orientation
• stigma
• virilization