In this presentation, I discuss the research design of a doctoral project centring on the experiences of 563 adults with a rare chronic illness-disability called Intracranial Hypertension (IH). Drawing on my own lived experience, I highlight how a flexible methodological approach supports the non-normative nature of chronic illness, allowing flexible engagement and accommodating participant and researcher impairments. By centring the unique needs of the IH community, this research maximised meaningful engagement of a diverse, global research group. I argue this approach supports knowledge production and moves toward a shared epistemology that may begin to redress the invalidation and epistemic injustice experienced by this population. 

The dominant medical meta-narrative of IH overlooks the expertise of those living with the condition, defying the intention of ‘Nothing about us without us’, and the IH community has not been previously discussed. By reimagining the social connections of this fragmented community, I demonstrate the connectedness of people with IH through an expansive social network and the nuanced way they engage in virtual spaces to connect, legitimise their experience, and build capacity and experiential expertise. Exploring the value of digital-based chronic illness communities of practice and its intersection with disability theory and medical perspectives, this study has strong generalizability for other energy-limiting or socially isolating conditions. I argue that engaging with the social capital of these 'communities of practice' alongside medical expertise creates strong opportunities for collaborative knowledge building in the future.

In outlining my research methodology, I demonstrate how a research design that has been consciously ‘cripped’ thoughtfully accounts for the specific needs and characteristics of chronically ill and disabled participants and ‘insider’ researchers, ensuring a more accessible and inclusive research experience.