Vulvodynia: from my personal experience of illness to the collective movement of empowered patients : An autophenomenography

Sammanfattning

This thesis is an autophenomenographic study of how an individual experience of chronic illness became part of the emergence of a collective patient-activist movement in Italy. The empirical material consists of a public Facebook and Instagram diary written by the author between January and October 2021, following a diagnosis of vulvodynia, and of a retrospective post published in 2023 that consciously closes that trajectory. Drawing on feminist phenomenology, situated knowledges, and Nina Lykke’s operationalisation of autophenomenography, the thesis investigates how public writing functioned simultaneously as a practice of self-understanding, mutual recognition, and political mobilisation. The analysis follows three interconnected movements: the embodied experience of vulvodynia in everyday life; the asymmetries of the clinical encounter, including diagnostic delay and medical gaslighting; and the gradual constitution of a collective patient subject through online exchanges, mutual aid, and alliance with the Italian transfeminist movement Non Una Di Meno. The thesis argues that the diary did not merely document illness, but actively participated in transforming a private and often unspeakable experience into a shared political ground. More broadly, it shows how public writing from within chronic illness can contribute to the emergence of collective forms of knowledge, recognition, and activism.