“It Opens the Conversation and Makes You Feel Less Alone. . .”: The role of disclosure and social support in managing polycystic ovary syndrome (PCOS)

Polycystic Ovary Syndrome (PCOS) is a common endocrine syndrome, affecting 8%-13% of women worldwide. It has been described as an isolating and stigmatizing syndrome, complicating avenues for disclosure. In this study, we explored how women with PCOS disclose their diagnosis to others and what factors influence their decision to do so. Through a reflexive thematic analysis of 28 interviews, we found that women first <i>broached PCOS with others</i>, which led to <i>the to building blocks of social support</i>, which then <i>maintained meaningful conversations</i> over time. Supportive interactions were beneficial, while unsupportive ones led to <i>dead ends</i>. Our study is one of the first to capture the decision-making process underlying the disclosure of PCOS within women's social networks. It extends prior research by highlighting how women decide whether, when, and how to share their diagnosis while weighing the risks of stigma against the benefits of social support.