ABSTRACT
Th e patient’s story comes third in the chapter sequence. Th is is regrettable in terms of the priorities I seek to present since patients should always come fi rst, but they have not been absent from the story to date. Th ere is such an intimate relationship between patients and their diseases that, in this narrative, both are contenders for the spotlight. Th is becomes apparent through the discussion on sociology, which points out that, while disease manifests itself objectively through eff ects on people, it is what patients experience that defi nes illness. Here we examine some personal
consequences of disease, trace the patient’s pathway through chronic disease using a simplifi ed form of the trajectory model before going on to look at implications of illness for people through the medium of sociology. Th e use of the term patient complex as subtitle to this chapter also prompts a word of explanation. In acute disease, the patient occupies a singular and transient state, subjected to focused therapies aimed at cure and exit. By contrast, in chronic disease the patient is not the sole occupant of the stage. Th e prolonged pathway draws in a solar system of participants that revolves around him or her. Th ese include the family, social circle, workplace and intimate carers. Th e patient complex is not a state of mind but the reality of all those who experience the disease complex. Th ere are dangers in telling people’s stories for them; in objectifying them as sociology subjects, or philosophising at them on the meaning of their suff ering. I think the former is the lesser evil and it is better to err in that direction. If meaning is to be found through or in their suff ering, this is a path for the individual, to discover what meaning they can for themselves and share this with fellow suff erers. For the sake of the continuing story the identity of the patient is prioritised. Th e details of sociology, and the social determinants of health and disease, are deferred to the latter part of the chapter, which concludes with a scenario that summarises the testimony of patients and carers.
