Stories of illness: biographies, pathographies and narratives

Back in June 2011 I attended a seminar on the role of biography in the history of psychology and psychiatry. This interesting and informative day raised a lot of questions about the relationship between biography and history. Modern academic historians often have an uneasy relationship with biography, perhaps because of the emphasis on the ‘Lives of the Great and the Good’ in traditional histories, perhaps because of the temptation to subjectivity, so dryly observed by Oscar Wilde:

Every great man has disciples, and it is always Judas who writes the biography

One of the consequences of the rise of psychology in the Nineteenth century was that biographers were no longer concerned merely with recording the events in a person’s life. As noted biographer Robert Gittings put it:

Modern biography aims to take account of every aspect of a man or woman’s life, conscious or unconscious, psychic or physical, public or private, physical states, especially long-term or deeply-laid, must be important to the biographer

There is no doubt that developments in medicine in the past 200 years have contributed to the evidence available to biographers, not least the death certificate, attesting to the cause of death. You have only to recall how eagerly the media report coroner’s reports on the death of celebrities to see how much medical evidence has become integral to the account of a person’s life. Indeed, there is even a sub-genre of biography that focuses on the medical evidence for the physical and mental state of its subject: the pathography, defined by the Oxford English Dictionary as:

The study of the life of an individual or the history of a community with regard to the influence of a particular disease or disorder; (as a count noun) a study or biography of this kind

Musicians (and composers), genius and power seem to be the most popular subjects for celebrity pathographies. For understandable reasons books such as The Pathology of Leadership raise concerns about the effects of illness and medical disorders on the decision making faculties of great leaders. At the Library, a whole section of the Biographies Collection is dedicated to famous patients (shelf locations BZPX and BZPXA). Here you can find out how a lock of Beethoven’s hair revealed that the likely cause of his many ailments and painful death was lead poisoning (syphilis, another candidate was ruled out because of the absence of mercury – the most common treatment for syphilis in the seventeenth century – in the lock of hair). An absence of traces of opiates suggested that he had not received pain relief during his illness and this may have been the reason why he was able to compose right up to the time of his death.

The latter half of the twentieth century saw the emergence of personal memoirs and autobiographical accounts of illness by ordinary people, as opposed to biographies about celebrity patients. These were usually less concerned with the physical and mental effects of illness and treatment than with the subjective experience of being ill: “the attempts of individuals to orient themselves in the world of sickness….”. as Anne Hawkins put it.

Early patient pathographies such as Anatomy of an Illness helped to address this issue, often expressing frustration with the health system as much as their experience of illness. Under the more general description of patient narratives, they are now relatively commonplace, and to be found in a variety of formats, including biographies, autobiographies, memoirs and graphic novels, and may recount the experience of the carer or family, as well as the patient.

In Reconstructing Illness, Anne Hawkins suggests that one factor in the rise of patient narratives has been the focus of modern medicine on the biophysical aspects of disease at the expense of the patient’s experience of illness. While there have been popular medical accounts about patients, often based on case studies, such as Oliver Sacks’ books, in general, the patient’s voice was missing. It appears the medical establishment are seeking to address this issue, in the relatively recent field of Narrative Medicine :

“A scientifically competent medicine alone cannot help a patient grapple with the loss of health and find meaning in illness and dying. Along with their growing scientific expertise, doctors need the expertise to listen to their patients, to understand as best they can the ordeals of illness, to honor the meanings of their patients’ narratives of illness and to be moved by what they behold so that they can act on their patients’ behalf.”

Medical education programmes have begun to make use of Graphic arts and other patient narratives to train doctors and health professionals in patient relations. And there is another, perhaps just as important function of the patient narrative. Some evidence suggests that writing about their illness may be beneficial to a patient’s well-being.

The proliferation of a more recent form of patient narrative – the online blog – may also testify to the beneficial effects of writing about illness. As one account of blogging during terminal care notes, it can also be a beneficial experience for the community of carers, friends and family around the patient.

Along with published patient narratives, blogs on illness offer a valuable insight into our contemporary cultural and personal experiences of illness and treatment, which will be of interest to historians in the future. It is relatively simple to preserve published materials, but less straightforward for transitory websites. The Library is doing its bit to preserve this material by electronically archiving selected examples of patient blogs, such as My personal journey through depression, and making them available in the Library catalogue.

Images:
A cholera patient experimenting with remedies. Coloured etching by R.I. Cruikshank, [1832?]. V0011135
Girl aged 12 in bed in a private ward of a hospital. N0012623