'If I had to live like you I think I'd kill myself': social dimensions of the experience of illness

The social experience of illness is complex and layered. It is made up of one’s own experience of illness, the ill person’s experiences of other people’s experiences of her illness, and finally, the ill person’s experience of her own illness in light of those intersubjective experiences. This complex web maps on to Sartre’s tripartite schema in Being and Nothingness (2003) of the three orders of the body, accounting for the complex dynamic between body-as-lived, biological body, and the body in its social being.
In this chapter I explore the experience of illness using this schema, aiming to uncover the complex ways in which this experience is textured by a social dimension. In particular, I attend to the ways in which one’s own bodily experiences are informed, interpreted, and styled by intersubjectivity. I claim that shared bodily experiences underpin much of our social commerce and that modifying bodily experiences such that they become alien to others, a focal feature of illness, exacts a social cost that can be formulated in terms of lost bodily empathy.
I then turn to respiratory illness to test Sartre’s schema. I begin by examining the perceived and experienced differences between normal and pathological breathlessness as an expression of the widening gap between the ill person’s bodily experiences and those of healthy others. Using George Canguilhem’s notion of health as individual norm, as formulated in The Normal and the Pathological (1991), I ask what happens when bodily norms are modified so that they no longer act as social, or shared, norms. This change can be captured by looking at how breathlessness, a major symptom of respiratory illness, modifies the ill person’s ability to perform everyday tasks, curtails her independence, and reshapes ‘normal living’. These, I suggest, are core features of human experience which underpin much of our social existence.
I end by looking at a specific social situation: the clinical encounter. There is strong evidence that there is little correspondence between lung function measured objectively, (e.g. in spirometry) and subjective experiences of breathlessness. I suggest that this gap can be at least partly explained by appealing to the loss of shared bodily norms which characterises the clinical encounter between the (healthy, objective) health professional, and the (ill, subjectively experiencing) patient. For example, respiratory patients have described breathlessness as akin to suffocating, drowning, and a near-death experience. These subjective, qualitative ways of describing breathlessness do not have objective, measurable correlates. I suggest that this asymmetry can be explained by the loss of shared bodily norms. However, the strong juxtaposition between the patient and health professional as contrasting objectivity and subjectivity, normality and pathology, health and illness, must be understood in a more nuanced way, as interlacing and overlapping in rich ways.