This presentation will explore how people with Intractranial Hypertension (IH), a rare and complex neurological condition, categorize and evaluate IH as a chronic illness-disability and how the medicalization of IH has influenced their experience and the social construction of their identity. This presentation draws on findings from a broader doctoral project involving a global population of over 560 adults with IH, including exploring their sick and disabled identities, experiences of dis/ablism and marginalisation.  I highlight the difficulties in associating their lived experience with disability, often based on socio-political, medicalised frameworks, and a level of internalised ablism. 

IH is a rare and complex chronic illness disability. It is difficult to treat, and care is disjointed and often inadequate. People with the condition experience significant disability that severely impacts quality of life. The way IH is understood, researched, and managed is dominated by a medical meta-narrative that subjugates the lived experiences and perspectives of those who live with the condition. The lived experience is largely misunderstood, and people who live with the condition express that their illness narratives are not taken seriously, and that the vast majority of their health care practitioners are insufficiently informed about their condition, leaving them in a constant state of uncertainty. 

The experience of IH, and the meaning people who live with it ascribe to health, illness and disability is heavily influenced by a complicated relationship with the healthcare system and their treating practitioners. The results also highlighted the dynamic nature of identity preferences among individuals with IH, with many expressing ambivalence towards embracing a disabled identity. While many recognise and acknowledge that their IH experience is “disabling”, they are at the same time reluctant to embrace a disabled identity. Drawing on Bergson and Deleuze's concepts, the study showed how the experience of IH unfolds fluidly across multiple realities, depending on the environment and context. 

The implications of this research underscore the importance of recognising the complexities in disabled identity and the medicalisation of chronic illness, calling for a more nuanced understanding of how illness and disability are constructed through social discourses. This study contributes to a broader conversation on the subjective experiences of individuals living with chronic illnesses and disabilities, emphasizing the need for a more inclusive and holistic approach to support that considers the diverse identities and perspectives of patients with IH, and further supports Alison Kafer's argument that in focusing so intently on disability identity, the crip insights of people who may be disabled but who don't identify themselves as disabled could be easily overlooked and highlights the importance of recognizing the complex relationship between disabled identity and the medicalised experience of chronic illness.