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 research 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. 

This thesis demonstrates how experiential expertise expands and complicates the dominant medical narrative of IH. The study explores three key dimensions: the doing, being, and knowing of IH. Approaching the research from a critical disability studies lens and using facet methodology, this research explores the experiential insights of the IH lived experience, and critically examines what we know and understand about IH, and how we come to know it. By centring the collective knowledge of the IH community, this research offers a radical difference to the existing IH scholarship. 

Drawing on data from an online qualitative survey and asynchronous, Facebook-mediated research discussion group, this research offers diverse, global perspectives from 563 adults with IH. The findings demonstrate that IH impacts "literally everything," with experiences extending far beyond clinical interpretations focused primarily on headache and vision. People with IH navigate a complex borderlands between medical and lived perspectives, and demonstrate how they manage their dynamic disability through contextually and relationally specific contexts. The collective experience of IH, characterised by omnipresent uncertainty, and significant negative sentiment, often generates a state of illbeing. The research demonstrates how people with IH develop nuanced forms of embodied knowledge through knowledge sharing and collective expertise-building within online communities, particularly on Facebook, that both expands and challenges the existing medicalised framework. 

As the first large-scale comprehensive study of Intracranial Hypertension from the first-person perspective, this thesis contributes to both critical disability studies and health humanities scholarship while advocating for meaningful integration of experiential knowledge in research and management decisions for IH, and chronic illness-disability more broadly.