Syndrome-Related Stigma in the General Social Environment as Reported by Women with Classical Congenital Adrenal Hyperplasia.
Stigma defined as "undesired differentness" (Goffman, 1963) and subtyped as "experienced" or "enacted," "anticipated," and "internalized" has been documented for patients with diverse chronic diseases. However, no systematic data exist on the association of stigma with somatic intersexuality. The current report concerns women with classical congenital adrenal hyperplasia (CAH), the most prevalent intersex syndrome, and provides descriptive data on CAH-related stigma as experienced in the general social environment (excluding medical settings and romantic/sexual partners) during childhood, adolescence, and adulthood. A total of 62 adult women with classical CAH [41 with the salt-wasting (SW) variant and 21 with the simple-virilizing (SV) variant] underwent a qualitative retrospective interview, which focused on the impact of CAH and its medical treatment on many aspects of women's lives. Deductive content analysis was performed on the transcribed texts. The women's accounts of CAH-related stigma were identified and excerpted as vignettes, and the vignettes categorized according to social context, stigma type, and the associated features of the CAH condition. Nearly two-thirds of women with either variant of CAH provided stigma vignettes. The vignettes included all three stigma types, and most involved some somatic or behavioral feature related to sex or gender. Stigma situations were reported for all ages and all social contexts of everyday life: family, peers, colleagues at work, strangers, and the media. We conclude that there is a need for systematic documentation of stigma in intersexuality as a basis for the development of improved approaches to prevention and intervention.
New York State Psychiatric Institute/Department of Psychiatry, College of Physicians & Surgeons of Columbia University, 1051 Riverside Drive, Unit 15, New York, NY, 10032, USA. meyerb@nyspi.columbia.edu.
Heino F L
HF
Meyer-Bahlburg
New York State Psychiatric Institute/Department of Psychiatry, College of Physicians & Surgeons of Columbia University, 1051 Riverside Drive, Unit 15, New York, NY, 10032, USA.
Jazmin A
JA
Reyes-Portillo
New York State Psychiatric Institute/Department of Psychiatry, College of Physicians & Surgeons of Columbia University, 1051 Riverside Drive, Unit 15, New York, NY, 10032, USA.
Jananne
J
Khuri
New York State Psychiatric Institute/Department of Psychiatry, College of Physicians & Surgeons of Columbia University, 1051 Riverside Drive, Unit 15, New York, NY, 10032, USA.
Anke A
AA
Ehrhardt
Department of Pediatrics, Mount Sinai School of Medicine, New York, NY, USA.
Maria I
MI
New
D000312:Adrenal Hyperplasia, Congenital; D000328:Adult; D005260:Female; D006801:Humans; D012189:Retrospective Studies; D012931:Social Environment; D057545:Social Stigma
Congenital adrenal hyperplasia; Disorders of sex development; Intersexuality; Stigma