Abstract
Earlier this year I had the pleasure of joining members of the British Pain Society's Philosophy Group at their annual conference in the Lake District. My subject was the experience of suffering, approached from a philosophical as opposed to medical perspective. The setting was sublime and the company excellent, but sadly, for me, the event was marred by my own ill health. There, amidst some of the country's experts in pain management, I succumbed to what was later diagnosed as trigeminal neuralgia. However, I was unaware of the existence of such a complaint, and therefore described my extreme and obvious discomfort as toothache, and responded obediently to the forthcoming drug advice – none of which worked. In the intervening months I have reflected upon this experience and wondered at how I continued to misdiagnose myself not once but twice, despite two dentists having told me in the preceding months that there was nothing wrong with my teeth. I don't condemn myself too severely, favouring, as I do, my personal tendency to play down symptoms against the background of a familial tendency to catastrophise.
Readers of this journal will be familiar with the editors' habit of reflecting on personal experience to shed light on issues and experiences that others might relate to. This particular experience has led me to question the way in which we present ourselves as patients, and the extent to which a confident self-diagnosis by an articulate and fairly well informed patient might actually do them more harm than good. Was my mistake one of not researching my symptoms and therefore not happening upon an appropriate diagnosis? I think not, and in fact I have decided in future to resist the temptation to self-diagnose, and instead I will attempt to present my symptoms unlabelled and unpackaged and take it from there.
However, this very personal decision does little to address the issue of how to manage the pursuit of information prior to, or during, a medical consultation to ensure the best results. At a recent outpatients' appointment, I realized belatedly that the consultant neurologist would probably be alarmed by the foolscap folder I was bringing in with me – my friend's latest novel in fact, but so easily mistaken for my latest Internet research. How informed does one need to be, and is it good for our health to avail ourselves of all the information out there to research the details of our own or others' complaints?
In her latest book So Much for That 1 the American writer Lionel Shriver offers a chilling, challenging but also funny account of one middle class couple's experience of life-threatening illness and the American health-care system. The work is commendable on so many levels, but central to the tensions as the story unfolds is the fact that Shep, the main male character, follows the Internet trail to a full understanding of his wife Glynis's prognosis. Meanwhile Glynis and her physician choose not to go there in the consulting room. Hence Shep acquires a secret which is his alone, and the reader is kept in the dark alongside the other characters in the book. Such is the power of Shriver as a novelist that I eschewed the quick fix of googling Glynis's condition, preferring instead to see how the secret did its work. Shriver is carefully non-judgemental about the deceits that grow as the book moves forward and thereby allows readers to decide for themselves what we should, or would want to, know in a similar situation.
At the end of the book and in the light of recent experience, ‘approach with caution’ is my new mantra in relation to medical information. You can get so far in a few clicks of the mouse, but as Shriver pointed out in a recent talk, even the providers of information (responsible ones at least) know to warn you of the points beyond which you might not want to go. It is common practice for the cancer charities to walk you through the information on symptoms, diagnosis, treatment options and then to say ‘wait, stop, think, there is more we can tell you but before you click you need to decide whether or not you want to know it’.