The patient’s story and the politics of representation.
Fifty years ago, medical students were always instructed to record a good history. This was a story of ‘the patient’. It could take anything from half an hour to an hour and was transcribed in readable handwriting in the patient’s notes under prescribed headings. These were: history of the presenting complaint, past history, drug history, social history and relevant family history, all of which were synthesised to create a differential list of possible diagnoses, a set of hypotheses which could be tested by a careful physical examination and laboratory investigations. The patient’s narrative was filtered through the metaphor of our white coats; a good medical history was after all the cornerstone of diagnosis; anything that did not pertain to that was regarded as irrelevant. Symptoms, their duration and context, and any relevant previous illnesses or conditions that ran in the family were collated and subjected to statistical analysis in order to construct a disease entity for inclusion in medical textbooks.
There is, however, another story; the narrative of suffering and disability that the sick person relates. It describes in some detail the way the illness developed and the effect it has on their lives; the constraints imposed on their work, physical activity, eating, their relationships, sex, sleep and their ability to concentrate. It is a tale of restriction and entrapment, but also of meaning. Much suffering is imposed by what illness is, but by what it means; the stigma of mental illness, the shame of incontinence or flatulence, the fear of progressive impairment and death, the frustration and inadequacy of physical disability, the dread of pain. But the illness narrative is not always a tragedy of hopelessness and failure, it can also be a story of resilience and survival. All too often, health professionals only listen to the parts of the story that are relevant to their particular expertise and ignore the rest. The main complaint that patients express to The IBS Network is that ‘my doctor never listens to me’. It’s true, few doctors have the time to listen to the autobiography of illness; like political interviewers, they have honed their interrogative skills to focus on the issue and remove all the ‘padding’ with interruptions. But how can doctors ever understand the ill person unless they take the time to listen and how can they treat effectively if they don’t understand?
The journey from the gleaming concrete and glass corridors of hospital towers to the soft furnishings, couch and easy chairs of the psychoanalytical space down the road has been for me both fascinating and rewarding, and I have been fortunate in having the freedom to hold both in mind as I listen to my clients. Healing depends on an integration. For diseases that have a definitive diagnosis and cause, pathology and medical treatments are dominant though not exclusive, while for medically unexplained disorders like IBS, life events and meaning are much more important. Nevertheless too many patients narrate the medical story of failed tests and treatment.
Narrative represents the individual, not the diagnosis. It can suggest hypotheses that may be tested in populations by statistical correlation. But why try to group patient experience? Surely, if illness is a representation of the life of the individual, it would seem better to identify the factors and events that have led to the illness and help the sick person understand and resolve their emotional impact of their meaning. So medical students should still be encouraged to take a good history, but this should include the patient’s narrative, not just the doctors’.
The Sensitive Gut 