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Syndrome-Related Stigma in the General Social Environment as Reported by Women with Classical Congenital Adrenal Hyperplasia

  • Special Section: Culture and Variants of Sex/Gender: Bias and Stigma
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Abstract

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.

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References

  • Acherman, J. C., & Hughes, I. A. (2011). Disorders of sex development. In S. Melmed, K. S. Polonsky, P. R. Larsen, & H. M. Kronenberg (Eds.), Williams textbook of endocrinology (pp. 868–934). Philadelphia, PA: W. B. Saunders.

    Chapter  Google Scholar 

  • Brewis, A. A. (2014). Stigma and the perpetuation of obesity. Social Science and Medicine, 118, 152–158. doi:10.1016/j.socscimed.2014.08.003.

    Article  PubMed  Google Scholar 

  • Chase, C. (1998). Hermaphrodites with attitude. Mapping the emergence of intersex political activism. GLQ: A Journal of Lesbian and Gay Studies, 4, 189–211.

    Google Scholar 

  • Chase, C. (1999). Rethinking treatment for ambiguous genitalia. Pediatric Nursing, 25, 451–455.

    PubMed  Google Scholar 

  • Chase, C. (2003). What is the agenda of the intersex patient advocacy movement? The Endocrinologist, 13, 240–242. doi:10.1097/01.ten.0000081687.21823.d4.

    Article  Google Scholar 

  • Davis, G. (Ed.). (2015). Narrative symposium: Intersex. Narrative Inquiry in Bioethics, 5, 87–150.

  • Diamond, M., & Garland, J. (2014). Evidence regarding cosmetic and medically unnecessary surgery on infants. Journal of Pediatric Urology, 10, 2–7.

    Article  PubMed  Google Scholar 

  • Earnshaw, V. A., & Quinn, D. M. (2011). The impact of stigma in healthcare on people living with chronic illnesses. Journal of Health Psychology, 17, 157–168. doi:10.1177/1359105311414952.

    Article  PubMed  Google Scholar 

  • Earnshaw, V. A., Quinn, D. M., Kalichman, S. C., & Park, C. L. (2013). Development and psychometric evaluation of the chronic illness anticipated stigma scale. Journal of Behavioral Medicine, 36, 270–282. doi:10.1007/s10865-012-9422-4.

    Article  PubMed  Google Scholar 

  • Earnshaw, V. A., Quinn, D. M., & Park, C. L. (2011). Anticipated stigma and quality of life among people living with chronic illnesses. Chronic Illness, 8, 79–88. doi:10.1177/1742395311429393.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ehrhardt, A. A., Evers, K., & Money, J. (1968). Influence of androgen and some aspects of sexually dimorphic behavior in women with the late-treated adrenogenital syndrome. Johns Hopkins Medical Journal, 123, 115–122.

    PubMed  Google Scholar 

  • Frisén, L., Nordenström, A., Falhammar, H., Filipsson, H., Holmdahl, G., Janson, P. O., et al. (2009). Gender role behavior, sexuality, and psychosocial adaptation in women with congenital adrenal hyperplasia due to CYP21A2 deficiency. Journal of Clinical Endocrinology and Metabolism, 94, 3432–3439. doi:10.1210/jc.2009-0636.

    Article  PubMed  Google Scholar 

  • Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.

    Google Scholar 

  • Hahn, S., Janssen, O. E., Tan, S., Pleger, K., Mann, K., Schedlowski, M., et al. (2005). Clinical and psychological correlates of quality-of-life in polycystic ovary syndrome. European Journal of Endocrinology, 153, 853–860. doi:10.1530/eje.1.02024.

    Article  PubMed  Google Scholar 

  • Himelein, M. J., & Thatcher, S. S. (2006). Depression and body image among women with polycystic ovary syndrome. Journal of Health Psychology, 11, 613–625. doi:10.1177/1359105306065021.

    Article  PubMed  Google Scholar 

  • Hughes, I. A., Houk, C., Ahmed, S. F., Lee, P. A., LWPES Consensus Group, & ESPE Consensus Group. (2006). Consensus statement on management of intersex disorders. Archives of Disease in Childhood, 91, 554–563. doi:10.1136/adc.2006.098319.

    Article  PubMed  PubMed Central  Google Scholar 

  • Jones, G. L., Hall, J. M., Lashen, H. L., Balen, A. H., & Ledger, W. L. (2011). Health-related quality of life among adolescents with polycystic ovary syndrome. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 40, 577–588. doi:10.1111/j.1552-6909.2011.01279.x.

    Article  PubMed  Google Scholar 

  • Karkazis, K. (2008). Fixing sex: Intersex, medical authority, and lived experience. Durham, NC: Duke University Press.

    Book  Google Scholar 

  • Keegan, A., Liao, L.-M., & Boyle, M. (2003). Hirsutism: A psychological analysis. Journal of Health Psychology, 8, 327–345. doi:10.1177/13591053030083004.

    PubMed  Google Scholar 

  • Lewis, V. G., Ehrhardt, A. A., & Money, J. (1970). Genital operations in girls with the adrenogenital syndrome. Obstetrics and Gynecology, 36, 11–15.

    PubMed  Google Scholar 

  • Lindemann, H., Feder, E. K., & Dreger, A. (2010). Fetal cosmetology. http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4470. Accessed February 14, 2010.

  • Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.

    Article  Google Scholar 

  • Major, B., & O’Brien, L. T. (2005). The social psychology of stigma. Annual Review of Psychology, 56, 393–421. doi:10.1146/annurev.psych.56.091103.070137.

    Article  PubMed  Google Scholar 

  • Meyer-Bahlburg, H. F. L. (2002). Gender assignment and reassignment in intersexuality: Controversies, data, and guidelines for research. Advances in Experimental Medicine and Biology, 511, 199–223.

    Article  PubMed  Google Scholar 

  • Meyer-Bahlburg, H. F. L. (2008). Treatment guidelines for children with disorders of sex development. Neuropsychiatrie de l’Enfance et de l’Adolescence, 56, 345–349. doi:10.1016/j.neurenf.2008.06.002.

    Article  Google Scholar 

  • Meyer-Bahlburg, H. F. L. (2014). Psychoendocrinology of congenital adrenal hyperplasia. In M. I. New, O. Lekarev, A. Parsa, T. T. Yuen, B. O’Malley, & G. D. Hammer (Eds.), Genetic steroid disorders (pp. 285–300). London: Academic Press/Elsevier.

    Chapter  Google Scholar 

  • Meyer-Bahlburg, H. F. L., Dolezal, C., Baker, S. W., Ehrhardt, A. A., & New, M. I. (2006). Gender development in women with congenital adrenal hyperplasia as a function of disorder severity. Archives of Sexual Behavior, 35, 667–684. doi:10.1007/s10508-006-9068-9.

    Article  PubMed  Google Scholar 

  • Meyer-Bahlburg, H. F. L., Dolezal, C., Baker, S. W., & New, M. I. (2008). Sexual orientation in women with classical or non-classical congenital adrenal hyperplasia as a function of degree of prenatal androgen excess. Archives of Sexual Behavior, 37, 85–99. doi:10.1007/s10508-007-9265-1.

    Article  PubMed  Google Scholar 

  • Meyer-Bahlburg, H. F. L., Khuri, J., Reyes-Portillo, J., & New, M. I. (2016). Stigma in medical settings as reported retrospectively by women with congenital adrenal hyperplasia (CAH) for their childhood and adolescence. Journal of Pediatric Psychology. doi:10.1093/jpepsy/jsw034.

    PubMed  Google Scholar 

  • Money, J. (1991). Biographies of gender and hermaphroditism in paired comparisons. Amsterdam: Elsevier Science Publishers B.V.

    Google Scholar 

  • Money, J. (1994). Sex errors of the body and related syndromes: A guide to counseling children, adolescents, and their families (2nd ed.). Baltimore, MD: Paul H. Brookes.

    Google Scholar 

  • Money, J., Hampson, J. G., & Hampson, J. L. (1955). Hermaphroditism: Recommendations concerning assignment of sex, change of sex, and psychologic management. Bulletin of the Johns Hopkins Hospital, 97, 284–300.

    PubMed  Google Scholar 

  • Nelson, A., & Nelson, V. (2010). “Hey Mitch-elle, you need a shave!”: The school days of hirsute adolescents. Qualitative Sociology Review, 6, 99–114.

    Google Scholar 

  • New, M. I., Lekarev, O., Mancenido, D., Parsa, A., & Yuen, T. (2014). Congenital adrenal hyperplasia owing to 21-hydroxylase deficiency. In M. I. New, O. Lekarev, A. Parsa, T. T. Yuen, B. O’Malley, & G. D. Hammer (Eds.), Genetic steroid disorders (pp. 29–51). London: Academic Press/Elsevier.

    Chapter  Google Scholar 

  • Pachankis, J. E. (2007). The psychological implications of concealing a stigma: A cognitive–affective–behavioral mode. Psychological Bulletin, 133, 328–345. doi:10.1037/0033-2909.133.2.328.

    Article  PubMed  Google Scholar 

  • Patton, M. Q. (2014). Qualitative research and evaluation methods: Integrating theory and practice (4th ed.). Thousand Oaks, CA: Sage.

    Google Scholar 

  • Preves, S. E. (2003). Intersex and identity: The contested self. Piscataway, NJ: Rutgers University Press.

    Google Scholar 

  • Puhl, R. M., & Latner, J. D. (2007). Stigma, obesity, and the health of the nation’s children. Psychological Bulletin, 133, 557–580. doi:10.1037/0033-2909.133.4.557.

    Article  PubMed  Google Scholar 

  • Quinn, D. M., & Chaudoir, S. R. (2009). Living with a concealable stigmatized identity: The impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health. Journal of Personality and Social Psychology, 97, 634–651. doi:10.1037/a0015815.

    Article  PubMed  PubMed Central  Google Scholar 

  • Sampogna, F., Tabolli, S., & Abeni, D. (2013). Impact of different skin conditions on quality of life. Giornale Italiano di Dermatologia e Venereologia, 148, 255–261.

    PubMed  Google Scholar 

  • Schneider, J. W., & Conrad, P. (1980). In the closet with illness: Epilepsy, stigma potential, and information control. Social Problems, 28, 32–44.

    Article  Google Scholar 

  • Speiser, P. W., Azziz, R., Baskin, L. S., Ghizzoni, L., Hensle, T. W., Merke, D. P., et al. (2010). Congenital adrenal hyperplasia due to steroid 21-hydroxylase deficiency: An Endocrine Society Clinical Practice Guideline. Journal of Clinical Endocrinology and Metabolism, 95, 4133–4160. doi:10.1210/jc.2009-2631.

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgments

The study was supported in part by USPHS Grant HD-38409 and Dr. Khuri by a postdoctoral fellowship T32 MH18264. Susan W. Baker, Ph.D., served as the primary interviewer. We thank all participants for their contribution of effort, time, and data to this study.

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Authors and Affiliations

  1. 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

    Heino F. L. Meyer-Bahlburg, Jazmin A. Reyes-Portillo, Jananne Khuri & Anke A. Ehrhardt

  2. Department of Pediatrics, Mount Sinai School of Medicine, New York, NY, USA

    Maria I. New

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  1. Heino F. L. Meyer-Bahlburg
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  2. Jazmin A. Reyes-Portillo
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  3. Jananne Khuri
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  4. Anke A. Ehrhardt
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  5. Maria I. New
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Correspondence to Heino F. L. Meyer-Bahlburg.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Meyer-Bahlburg, H.F.L., Reyes-Portillo, J.A., Khuri, J. et al. Syndrome-Related Stigma in the General Social Environment as Reported by Women with Classical Congenital Adrenal Hyperplasia. Arch Sex Behav 46, 341–351 (2017). https://doi.org/10.1007/s10508-016-0862-8

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  • DOI: https://doi.org/10.1007/s10508-016-0862-8

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