Doing, Being and Knowing Intracranial Hypertension: Exploring Facets of IH through Experiential Expertise

Abstract

This research explores how people living with Intracranial Hypertension (IH), a rare and complex chronic illness disability, develop valuable knowledge through their lived experiences. By gathering insights from 563 adults with IH worldwide, the study shows that IH impacts "literally everything," expanding, and complicating, dominant medicalised perspectives. The research demonstrates how online communities enable people with IH to share expertise and build collective understanding, creating space for more comprehensive, inclusive approaches to research and management.