Abstract:
This paper explores the divergence between medicalised framings of weight in intracranial hypertension (IH) and the lived experiences of people with the condition. Drawing on qualitative data from 563 adults with IH across 37 countries, the study centres on experiential expertise often overlooked in IH research and clinical practice. Despite conflicting findings in the medical literature, weight gain is positioned as causative, and weight loss is regarded as 'the only disease-modifying therapy,' with 81% of participants being told it would cure their condition. Participants described healthcare encounters that often place excessive emphasis on weight at the expense of comprehensive investigations, and their experiential expertise challenges this emphasis. People with IH (pwIH) clearly contend that weight gain is a symptom rather than a cause, weight loss frequently fails to deliver promised outcomes, and hormonal and metabolic explanations make sense of their embodied experiences. Drawing on concepts such as epistemic injustice and a critical disability studies framework, the analysis shows how weight-centric approaches create an impossible bind, produce psychological and iatrogenic harm (harm caused by medical treatment), and compromise help-seeking behaviour. The paper argues that meaningful engagement must recognise both medicalised and experiential knowledge as complementary and advocates for weight-inclusive approaches in IH research and practice.