“If You Never Came in and Saw Me, You Would Probably Be Dead”: Exploring Intercultural Communication and Health Communication Issues Surrounding PCOS



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Polycystic ovarian syndrome is a multifactorial, heterogeneous, complex genetic, endocrine and metabolic disorder which is characterized by chronic anovulation, and biochemical and clinical manifestations of hyperandrogenism (Allahbadia & Merchant, 2010). Symptoms of PCOS include infertility, obesity, hirsutism and alopecia. Moreover, women with PCOS endure discrimination due to the inability to conceive and deliver healthy children, maintain healthy weight, or obtain beauty as defined by dominant societal standards. This dissertation calls attention to the quality of care and support for nondominant individuals and groups in dominant healthcare settings. The dissertation also works to highlight communication issues surrounding PCOS, and address knowledge gaps in causes and cure. Women living with PCOS experience subtle insults and invalidations by dominant group members who may be unaware of the condition, resulting in unintended emotional harm. This phenomenological study explored the communicative experiences of sixteen women diagnosed with PCOS, and five health care practitioners. The semi-structured interviews foreground general and nonmonolithic interactions associated with the invisible disease. Results yield four major themes: 1) the road to diagnosis; 2) the lived experiences of patients; 3) microinvalidations; and 4) physicians’ communication. Additionally, the study revealed communicative tensions and strategies to achieve desired health outcomes. These respective voices contribute to knowledge about patients’ interactions with doctors, family and friends. Prior studies have explored invisible disease, but few studies include international populations. This research draws from the perspectives of African and African American women, European American women, and Hispanic women. Their educational backgrounds ranged from High School Diplomas to Ph.D. holders. Salaries ranged from 20k – 100k annually. Consequently, the value of this research includes contextualized experiences with PCOS across ethnicity, social economic status, education and age. Readers will also gain a better understanding of the precarious connection between communication and invisible disease.