# “Just lose weight”: weight-based medical bias and experiential expertise in intracranial hypertension

## TL;DR

This paper examines how weight-focused medical advice for intracranial hypertension conflicts with patients' lived experiences, highlighting the need for inclusive approaches.

## Contribution

The study introduces experiential expertise as a critical perspective to challenge weight-centric medical framings of intracranial hypertension.

## Key findings

- 81% of participants were told weight loss would cure their intracranial hypertension.
- Participants argue weight gain is a symptom, not a cause, and weight loss often fails to improve outcomes.
- Weight-centric approaches cause psychological harm and obscure structural factors affecting IH.

## Abstract

Despite conflicting findings in the medical literature on Intracranial Hypertension (IH), weight gain is positioned as causative, and weight loss is regarded as "the only disease modifiable therapy." This paper explores the divergence between these medicalised framings of weight and the lived experiences of people with the condition, drawing on concepts such as epistemic injustice.

The study draws on qualitative data from 563 adults with IH across 37 countries, generated through an online qualitative survey and an asynchronous digital research discussion group with 101 participants. Employing facet methodology and collective narrative enquiry within a critical disability studies framework, the research centres experiential expertise often overlooked in IH research and clinical practice.

Eighty-one per cent of participants reported being told that weight loss would cure their condition. Participants described healthcare encounters that placed excessive emphasis on weight at the expense of comprehensive investigations. Their experiential expertise challenges this emphasis: people with IH clearly contend that weight gain is a symptom rather than a cause, that weight loss frequently fails to deliver promised outcomes, and that hormonal and metabolic explanations make sense of their embodied experiences. The analysis shows how weight-centric approaches create an impossible bind, produce psychological and iatrogenic harm, and compromise health help-seeking behaviour. Weight-focused approaches also obscure the structural and social factors that independently contribute to IH outcomes.

Drawing on Mol's concept of the body multiple, the paper argues that clinical and experiential enactments of IH represent fundamentally different understandings of the condition, each incomplete without the other. Meaningful engagement requires recognising experiential expertise as a legitimate form of knowledge and adopting weight-inclusive approaches that prioritise symptom management and quality of life in IH research and practice.