Thesis Overview:

The medical understanding of Intracranial Hypertension (IH) has been predominantly shaped by clinical perspectives, focusing on physiological mechanisms and medical treatments. While this biomedical knowledge is crucial, it represents only a partial understanding of the condition. With a significant lack of first person perspectives included in the IH research, this project aims to broaden the existing narrative by exploring the lived experiences of people with IH, recognising their experiential knowledge as a legitimate source of expertise. 

Through a critical disability studies lens, this thesis presents a radical departure from existing Intracranial Hypertension (IH) scholarship by centring the collective knowledge of the IH community to critically examine what we know about IH and how we know it. Drawing on perspectives from 563 adults with IH via online surveys and a Facebook-mediated discussion group, the research explores three key facets: the doing, being, and knowing of IH. Key findings demonstrate that the IH experience extends beyond reductive clinical interpretations, and highlights how people navigate complex borderlands, manage uncertainty, and develop embodied expertise. This first large-scale study of IH from the first-person perspective advances critical disability studies and health humanities while advocating for integration of experiential expertise in chronic illness-disability research and management.