When the doctor believes you, but you’re still not happy: Legitimized contested illness and patients’ negative post-consultation experiences and agency

This article investigates patients’ negative and ambivalent lived post-consultation experiences and the related agencies when a doctor legitimizes their contested illness. The primary data consist of 25 telephone interviews conducted soon after the patients’ consultation with a doctor. All the interviewed patients suffered from sick building syndrome. Using reflexive thematic analysis in our study, underpinned by critical realist ontology and epistemology, we generated three themes that characterized these lived post-consultation experiences, and how they shaped patient agency. The results demonstrate that a doctor’s legitimization of a contested illness can be a source of simultaneous contentment and suffering for the patient (Theme 1: Confusion), as well as a source of hesitation and distrust (Theme 2: Uncertainty). It can also leave the patient feeling helpless and frustrated by their difficult circumstances (Theme 3: Disappointment). These experiences were related to a varying sense of agency. The study contributes to contextualizing the meaning of a doctor’s legitimization of a patient’s contested illness, depicting it as indisputably significant yet insufficient in itself to resolve the uncertainties and challenges the patients face. The findings can be used to develop patient-centered consultation practices for dealing with challenging medical encounters with contested illnesses.