Digital-based chronic illness communities are often undervalued and difficult to quantify. In this presentation, I highlight the nuanced connectedness of people with chronic Intracranial Hypertension (IH) and their supporters through an expansive social network that has developed on Facebook. While this study focuses on IH as a case study, it has a strong generalizability to other chronic illness and disability communities. 

The IH community has not been widely discussed, with previous descriptions often framed within the medical context, which views people with IH as 'patients' and members of a 'clinical cohort'. By reimagining the social connections of this fragmented community, I demonstrate the connectedness of people with IH and the nuanced way they engage in virtual spaces to connect, legitimise their experience, and build capacity and experiential expertise. By reimagining the social connections of this fragmented community, I demonstrate the connectedness of people with IH and the nuanced way they engage in virtual spaces to connect, legitimise their experience, and build capacity and experiential expertise. 

In outlining my unique approach to the research, I discuss how this doctoral project leveraged the researcher's insider positionality to access this virtual community, engaging 563 adults in a qualitative survey. 101 participants were engaged in a long-form asynchronous group format, mediated through the familiarity of the Facebook environment enabling deep exploration of illness narratives and collective discourse about their needs, desires, joys and challenges. I describe how centering the unique needs of this community in the research design facilitated a diverse, global research group spanning multiple sociocultural contexts and accommodating variable health and life demands. This meaningful engagement supports knowledge production and moves toward a shared epistemology that may begin to redress the invalidation and epistemic injustice experienced by this population.