LAUSR

Chronic diseases are the main disease burden worldwide, leading to premature deaths and poor individual and population health outcomes. Although modern medicine has made significant progress in developing effective treatments, only around 50% of people follow longterm treatment recommendations in highincome countries and presumably even less in lowincome and middleincome countries. Health outcomes for chronic diseases follow a social gradient across socioeconomic groups, suggesting that the 50% adherence rate distributes unequally across social groups, affecting those who live in disadvantage the most despite universal health coverage. Bioethicists have largely ignored inequalities that arise from differences in adherence to longterm treatments and the importance of the ethical dimension of chronicity for clinical practice. As I discuss in detail elsewhere, the concept of ‘chronic disease’ lacks a successful and agreed definition, failing to be structured in a traditional way and allowing for a disjunctive group of diseases to fall under the concept. Still, the main element that helps distinguish ‘chronic diseases’ from all other diseases is their long duration, so the noun chronicity can help demarcate and identify the nature of ‘chronic disease’. Drawing on conceptual analysis and phenomenological research on illness that highlight the tension between the cyclical and static elements of chronic disease, I have argued that chronicity has a phenomenological sense beyond its thin sense, merely as long duration. Chronicity in a phenomenological sense is ‘characterised by a paradoxical experience of long duration of disease, which implies significant abstraction or awareness of its (the disease’s) presence in the absence of its manifestation, as likely to recur’ (...) demanding to ‘transfer the quality of continuous and irreversible to an experience that might be thought of as discontinuous in terms of how it is expressed in the body’. Based on qualitative research with people living with a broad range of chronic diseases in the UK, I have further specified chronicity in a phenomenological sense to also reflect the uncertainty of life with chronic disease and its impact on chronic care. The highly unpredictable health outcomes resulting from complex interactions between individual disease trajectories, individual responses to treatments and the dynamic—often competing—life demands beyond the disease and across time, stand in contrast with the idea of ‘controllability’ of disease in a biomedical sense, which focuses on the technical optimal response of symptoms to specific medicines. Being able to adapt and respond to recurring but still unpredictable health events largely depends on people’s control over their environment, so although chronicity in a phenomenological sense affects everyone living with chronic disease, it does not affect everyone equally. Living with chronic disease and chronic care is hard. It is a continuous effort to keep in mind that symptoms will pass or improve when people are feeling ill, as well as remembering that symptoms will come back when people are feeling fine or better. People living with chronic disease often have to go against their bodily experience, avoid projecting based on how they feel at present and act on the disease regardless of the symptoms and the side effects of treatment. Although frequency and predictability of the symptomatic cycles can vary significantly within and across diagnostic categories, the experience of chronic disease is marked by an overall experience of vulnerability and lack of control associated with the disease’s whimsical or random manifestations despite people’s efforts to manage their disease.