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Archives of Sexual Behavior

, Volume 46, Issue 2, pp 341–351 | Cite as

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

  • Heino F. L. Meyer-BahlburgEmail author
  • Jazmin A. Reyes-Portillo
  • Jananne Khuri
  • Anke A. Ehrhardt
  • Maria I. New
Special Section: Culture and Variants of Sex/Gender: Bias and Stigma

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.

Keywords

Stigma Disorders of sex development Intersexuality Congenital adrenal hyperplasia 

Notes

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.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

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.

Informed Consent

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

References

  1. 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.CrossRefGoogle Scholar
  2. 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.CrossRefPubMedGoogle Scholar
  3. 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
  4. Chase, C. (1999). Rethinking treatment for ambiguous genitalia. Pediatric Nursing, 25, 451–455.PubMedGoogle Scholar
  5. 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.CrossRefGoogle Scholar
  6. Davis, G. (Ed.). (2015). Narrative symposium: Intersex. Narrative Inquiry in Bioethics, 5, 87–150.Google Scholar
  7. Diamond, M., & Garland, J. (2014). Evidence regarding cosmetic and medically unnecessary surgery on infants. Journal of Pediatric Urology, 10, 2–7.CrossRefPubMedGoogle Scholar
  8. 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.CrossRefPubMedGoogle Scholar
  9. 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.CrossRefPubMedGoogle Scholar
  10. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 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.PubMedGoogle Scholar
  12. 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.CrossRefPubMedGoogle Scholar
  13. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.Google Scholar
  14. 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.CrossRefPubMedGoogle Scholar
  15. 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.CrossRefPubMedGoogle Scholar
  16. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  17. 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.CrossRefPubMedGoogle Scholar
  18. Karkazis, K. (2008). Fixing sex: Intersex, medical authority, and lived experience. Durham, NC: Duke University Press.CrossRefGoogle Scholar
  19. Keegan, A., Liao, L.-M., & Boyle, M. (2003). Hirsutism: A psychological analysis. Journal of Health Psychology, 8, 327–345. doi: 10.1177/13591053030083004.PubMedGoogle Scholar
  20. Lewis, V. G., Ehrhardt, A. A., & Money, J. (1970). Genital operations in girls with the adrenogenital syndrome. Obstetrics and Gynecology, 36, 11–15.PubMedGoogle Scholar
  21. Lindemann, H., Feder, E. K., & Dreger, A. (2010). Fetal cosmetology. http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4470. Accessed February 14, 2010.
  22. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385.CrossRefGoogle Scholar
  23. 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.CrossRefPubMedGoogle Scholar
  24. 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.CrossRefPubMedGoogle Scholar
  25. 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.CrossRefGoogle Scholar
  26. 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.CrossRefGoogle Scholar
  27. 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.CrossRefPubMedGoogle Scholar
  28. 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.CrossRefPubMedGoogle Scholar
  29. 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.PubMedGoogle Scholar
  30. Money, J. (1991). Biographies of gender and hermaphroditism in paired comparisons. Amsterdam: Elsevier Science Publishers B.V.Google Scholar
  31. 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
  32. 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.PubMedGoogle Scholar
  33. 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
  34. 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.CrossRefGoogle Scholar
  35. 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.CrossRefPubMedGoogle Scholar
  36. Patton, M. Q. (2014). Qualitative research and evaluation methods: Integrating theory and practice (4th ed.). Thousand Oaks, CA: Sage.Google Scholar
  37. Preves, S. E. (2003). Intersex and identity: The contested self. Piscataway, NJ: Rutgers University Press.Google Scholar
  38. 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.CrossRefPubMedGoogle Scholar
  39. 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.CrossRefPubMedPubMedCentralGoogle Scholar
  40. 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.PubMedGoogle Scholar
  41. Schneider, J. W., & Conrad, P. (1980). In the closet with illness: Epilepsy, stigma potential, and information control. Social Problems, 28, 32–44.CrossRefGoogle Scholar
  42. 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.CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Heino F. L. Meyer-Bahlburg
    • 1
    Email author
  • Jazmin A. Reyes-Portillo
    • 1
  • Jananne Khuri
    • 1
  • Anke A. Ehrhardt
    • 1
  • Maria I. New
    • 2
  1. 1.New York State Psychiatric Institute/Department of PsychiatryCollege of Physicians & Surgeons of Columbia UniversityNew YorkUSA
  2. 2.Department of PediatricsMount Sinai School of MedicineNew YorkUSA

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