What is a ‘story’? I was asked this question recently by someone who had been associated with whole person healthcare for a long time. ‘Story’ seems such a simple concept. Humans are storied beings. But suddenly it got complicated. There was too much at stake. As in a game of ‘snakes and ladders’, we had seemingly slipped right back to the beginning again.
Since 1987 I have been emphasizing important relationships between peoples’ illnesses or diseases and their stories. I have seen many people with physical disease grasp quite quickly that their symptoms, their diseases, have arisen in relation to their stories. Many have found that the awareness of such connections enables them to deal with their lives differently, and in such a way as to improve their health, and even recover entirely.
A man developed sinusitis in August each year and it lasted until Xmas. It originally began when his wife gave birth to their first child, in August, and (for complex reasons) he felt competition for her attentions. He had had sinusitis for the 15 years since the birth. Many investigations and treatments failed to help.
It finally disappeared entirely when we noticed that each year in early August he would feel a dread coming on: “it will be here again soon”. Within 10 days he would be sick. Confronting this dread resolved the problem permanently.
The word story was the term we used for whatever we uncovered together. This uncovering was prompted usually by asking about any relevant life events, feelings, important meanings, relational issues and more, which may have been active at the time of the emergence of the illness. Sometimes the story emerged just through very careful listening (and ‘hearing’) something they had said spontaneously, without any prompting at all. Many patients quickly understood that what was emerging, what we were exploring together, was amply captured by the word story.
Stories do have common themes, but they are always unique to each person. Sometimes the story is about an unresolved feeling or set of feelings, a traumatic event or series of events, a loss or series of losses, loneliness or isolation, or a loss of purpose, or uncertainties engendered by how they had been responded to in the healthca re system, and much more. Their story was always about their unique or individual experience. Like works of art stories are infinitely varied. I know I have a story, and so do you. Many patients get this quite quickly, and in clinical care the notion of story communicates easily and meaningfully.
Though the story concept is simple, there are a lot of things happening when a person (a patient with a physical illness) meets a clinician who invites emergence of the story.
Some of these are as follows. The patient feels heard and listened to, and treated as a person, not just as a diagnostic and treatment challenge. The patient ‘feels’ the sense of integration of ‘all’ they are into a ‘whole’. This is a very good feeling because this is their natural or original state; before they were divided up into compartments, organs, systems, pieces, according to the disciplines of healthcare. Being treated as a whole can be a novel and even jolting experience for the patient—’how is it that I have been in the healthcare system for five years, and now this?!’ The obviousness of it all. Becoming aware of one’s story, the connections between the story and illness, and being supported by a warm encouraging clinician, can lead to working with the issues in a productive way not possible previously.
So why is the notion of story in medicine so foreign to clinicians? Typically we (the clinicians) want the medical truth rather than the human truth (we need both). Medical truth is largely about science, measurement, labelling (diagnosis), and standard ways of treating. These perspectives give us enormous benefits. But in our narrow desire to essentialize, master, know medically, deploy, and instrumentalize, we frequently fail to get close to the patient’s unique and individual story, and thus we lose a crucial dimension of the person that may be helping make them sick and keep them sick.
If we make it safe for patients to tell their stories, many will do so. We need both the medical perspectives and the stories.