Living with Uncertainty and Stigma: Self-Experimentation and Support-Seeking around Polycystic Ovary Syndrome

Polycystic Ovary Syndrome (PCOS) is a condition that causes hormonal imbalance and infertility in women and people with female reproductive organs. PCOS causes different symptoms for different people, with no singular or universal cure. Being a stigmatized and enigmatic condition, it is challenging to discover, diagnose, and manage PCOS. This work aims to inform the design of inclusive health technologies through an understanding of people’s lived experiences and challenges with PCOS. We conducted semi-structured interviews with 10 women diagnosed with PCOS and analyzed a PCOS-specific subreddit forum. We report people’s support-seeking, sense-making, and self-experimentation practices, and find uncertainty and stigma to be key in shaping their unique experiences of the condition. We further identify potential avenues for designing technology to support their diverse needs, such as personalized and contextual tracking, accelerated self-discovery, and co-management, contributing to a growing body of HCI literature on stigmatized topics in women’s health and well-being.