Embodied wisdom: towards acceptable and helpful explanations for functional somatic symptoms

Many people with persistent symptoms navigate illness without an adequate explanatory framework. The systematic disadvantages that arise from the lack of a collectively shared explanation can be considered a form of epistemic injustice, namely hermeneutic injustice. In response to this problem, we explored whether therapeutically relevant and broadly acceptable explanations for symptoms could be developed through iterative stages of dialogue between knowledge partners with lived experience of multisystem functional somatic symptoms (FSS), healthcare professionals across disciplines, symptom researchers, translators and designers. This participatory design project, positioned within a contested area of healthcare, aimed to bridge the gap between patients' and healthcare professionals' epistemic worlds by offering a symptom explanation framework that can reflect complex causality and multiple perspectives. Key conceptual considerations encountered during the process included: the importance of coherence across ontological, scientific and clinical levels of explanation; the need for a therapeutic model of agency that empowers without assigning blame; the integration of temporal dimensions into explanation; the use of metaphor and personal narrative; the role of the internet in shaping illness identity; and the challenge of personalisation of explanations intended for the public domain. The resulting framework is available open-access at www.bodysymptoms.org and presents 28 broadly relevant, acceptable and usable explanations for FSS, drawn from current perspectives of patients, healthcare professionals and researchers across Europe, alongside actionable health advice.