When you hear the term "narrative medicine", what does this mean to you? Most haven't heard or know little about it. Narrative medicine isn't something new, and has in fact been around far longer than you can imagine.
A doctor who treats a patient's medical troubles merely as a problem to be solved, without taking into account the specific emotional and psychological state, along with any relevant personal family history, is doing only half a job. Narrative medicine is the process of looking at the entire story of the person. Patients suffering ill health need people around them who can fully comprehend and understand their particular disease; seeing the complete picture, recognising symptoms, side effects of medications, suggesting possible treatments, being aware of the emotional ramifications that touch the patient along with other members of the family, talking about long term prognosis, and realising the concerns any patient understandably would have upon diagnosis. Treating a patient as an individual person who has a name, and not merely an interesting case, encourages the patient to open up, and valuable dialogue between doctor and patient can transpire. In an ideal world supporting and accompanying the patient through their illness whilst also treating their medical problems is how it should be.
However in reality, a doctor has strict time restraints regarding how long he spends with each patient, nevertheless narrative medicine can still be applied. A doctor aware of this valuable additional tool, not only can improve diagnosis but ultimately treatment, and giving empathy that patients need and deserve. Simply applying the powers of observation can make a difference. When a patient enters a doctor's office, by watching and observing how the patient walks into the room; posture, gait, facial expression, how he or she sits down, can within a few seconds summon up a rough picture indicating the condition both physical and emotional. Every detail, no matter how small, if observed and noted can be of tremendous help, possibly filling in information or details, like missing pieces of a jigsaw puzzle; a larger, clearer picture might then come into view. Eye to eye contact; another very important feature of a good consultation, and using the patient's first name immediately makes even the shortest of visits more personal, leaving the patient satisfied he/she has been seen as a person, an individual, not merely another case in the endless stream of people a doctor generally sees each day. These practices require little additional time, on a regular doctor's appointment slot, and yet can vastly improve the outcome for both doctor and patient.
A patient can also help to get the most out of a short time period by arriving on time and prepared; making a list of questions, or new symptoms and additional information that may be pertinent. A list ensures nothing is forgotten, no precious time is wasted, which again helps doctor and patient with a joint goal, working as a team. When suffering a chronic disease, it's a good idea to take along an advocate, whether it be a caregiver or family member, to ensure nothing is overlooked.
Last June I was given the privilege of travelling to Italy where I attended The First International Congress of Narrative Medicine and Rare Diseases. The congress was hosted by The Italian National Institutes of Health in Rome who accepted my abstract on "Writing as Therapy" and invited me to give an oral presentation. As a patient I wear two hats: one for Gaucher disease which is a rare chronic genetic disorder and a second hat for Parkinson's, a relatively common degenerative disease. I was the only patient representing these two diseases and felt it was an important opportunity to bring the care of chronic disease to the forefront from the patient's perspective.
The congress was tailor made for me; Narrative Medicine and Rare Diseases - the definition of "narrative": to narrate by telling a story, in my case narrative poetry, and without doubt, I certainly qualified for the rare disease part! I spoke to a room full of prominent people in the medical field who got to hear about Gaucher and Parkinson's disease directly from a patient's viewpoint, as I told them my story and how writing can be highly therapeutic. I met some amazing people, with great minds and innovative ideas, all striving towards a better health system marrying the current health approach along with narrative medicine.