Background Diagnosis of, and treatment for, serious illness can disrupt people’s lives and identities, bringing a heavy emotional burden in addition to symptoms and treatment side-effects. Here we compare two different conditions, to demonstrate the additional emotional burdens and work experienced by people with a ‘contested’ illness.

Methods Qualitative interviews conducted using same methods with 63 adults with Long Covid and 33 men diagnosed with breast cancer.

Interviews were audio- and/or video-recorded, transcribed verbatim and analysed thematically, initially separately for the two conditions. A subsequent comparative analysis was informed by theoretical literature on epistemic injustice and ‘candidacy’. We examined how and why patients with these conditions felt their lived experienced was contested by others and the consequences of this.

Results Both patient groups encountered surprise and/or disbelief about their condition, from their social networks and health care professionals. This added an emotional burden when they felt they needed to justify their illness experience. Whilst already dealing with debilitating symptoms or treatment side effects, their limited psychological and emotional resources were further drained in countering feelings of invisibility, being morally compromised (‘not a real man’, ‘malingerer’) and needing to bear the ‘burden of proof’. For men with breast cancer, the underlying foundation of ‘contestation’ was not the nature of their condition, but their status as an appropriate ‘candidate’ for having breast cancer, arguably the most stereotypically ‘female’ disease. This manifested itself in challenges to their claim to the condition as a man (e.g. having to show their mastectomy scar as proof; female forms of address (‘Mrs X’) in treatment settings). For Long Covid, the underlying foundation for feeling disbelieved, discredited or ‘invisible’ related to the emergent nature of this condition, with its poorly understood aetiology, symptoms, treatment pathways, or likely prognosis. This could be heightened by broadcast and social media (mis)representations of Long Covid.

Conclusion For people with a ‘contested’ illness, the additional burden of responding to others’ reactions places emotional demands which detract from people’s recovery and sense of self. This could be countered amongst the general public by better information about contested conditions. It also underlines the importance of the responses from health care professionals and health care systems to those experiencing novel, poorly-understood illnesses, or who appear ‘unlikely candidates’ for well-understood conditions.