‘Illness as many Narratives: Arts, Medicine and Culture’ by Stella Bolaki (Edinburgh University Press, 2016).
Following our initial call for clinical and academic reviews of ‘Illness as many Narratives,’ Dr Sophie Fitzsimmons offers her perspective as a junior doctor. You can see the accompanying review offered by Drs Claire Hooker and Scott Fitzpatrick here.
A photograph of a woman, nude from the waist up, staring expressionlessly into the camera. Her left breast bears a disfiguring scar, but perhaps more shocking are the words “Property of Jo Spence?” inscribed above it in black marker. This, a self-portrait by the photographer Jo Spence produced during her treatment for breast cancer, is one of the diverse illness narratives discussed by Stella Bolaki in Illness as Many Narratives: Arts, Medicine and Culture.
Bolaki’s book provides readings of illness narratives specifically (and innovatively) in a range of media not always included in traditional studies of illness narratives, which are usually spoken or written. Illness as Many Narratives includes examples of photography, artists’ books, performance art, theatre, film, social media, and animation, from people directly or indirectly experiencing a range of chronic health problems.
An illness narrative is ‘[an] expression [of the] subjective or lived experience of a particular disease or condition’ (p. 3), which is distinct from the clinical definition of a specific disease. It is not merely a list of symptoms, but a complex communication of the experiences and feelings that are part of the process of being ill. Illness narratives may exist as part of a professional or personal encounter; as art and a public expression of the ‘illness experience’; and, increasingly, as therapy (not only for mental health problems but also for people coping with chronic diseases such as diabetes).
The book is divided up into seven chapters, each of which discusses a different medium or work, though several important themes recur. The concept of using illness narratives as therapy – as a way of regaining ownership of the body during the often depersonalising experience of being a patient – is one that resurfaces throughout the book. One example of this is the portrait above, described by Spence herself as ‘a talisman to remind myself that I still had some rights over my own body’ (p. 31). Elsewhere, this theme is contrasted with the oversharing or voyeurism that may come from exhibiting illness narratives in the public domain, for example in the divided responses received by the many illness narratives that appear on social media. Examples given here are Lisa Bonchek Adams, who chronicled her experience with breast cancer on her blog and on Twitter; and journalist Scott Simon, who ‘live-tweet[ed] his mother’s last moments [from the ICU]’ (p. 218).
Various facets of the doctor-patient relationship are also explored. There is a tendency to highlight negative rather than positive experiences with doctors, though it is unclear whether this is limited by the works themselves or whether there is a bias in Bolaki’s selection. Nevertheless, there are good examples of poor communication skills that make uncomfortable reading for clinicians and laypeople alike. In Voices: Five Doctors Speak bookmaker Martha Hall details conversations with various doctors around the time of her breast cancer recurrence with jarring phrases such as ‘You’ve failed [the treatment]’ and ‘Four and a half years is not bad’ (p.76). The inspiration for Spence’s self-portrait (above) came from a particularly unpleasant encounter with a breast surgeon in which she was marked for surgery – ‘A young man[…]whom I had never seen before […] drew a large black cross above my breast, uttering those memorable words: “That’s the one that is coming off”’’ (p.30).
Bolaki also skillfully draws lessons about doctor-patient interaction from works that do not directly represent or mention clinicians. One example of this is the chapter on the play Well, in which playwright Lisa Kron tells the story of her childhood and early adulthood, focusing on both her mother’s and her own chronic ill health. However, she is constantly interrupted and corrected by her mother who is also onstage, and all the characters frequently break the fourth wall and speak directly to the audience. This is used to illustrate the many occasions in medicine where what should be a two-way exchange between doctor and patient is often disrupted – by interrupting relatives, by the doctor speaking to the rest of the medical team instead of the patient, or indeed by the doctor’s own expectations, trying to make the patient’s story fit a pre-defined narrative.
Reading this book as a practicing doctor, I have been introduced to a wealth of thought-provoking works that I doubt I would have otherwise come into contact with. Bolaki’s readings illustrate many important themes within medicine, and indeed a broad range of other fields including feminism, politics, and aesthetics that I lack the expertise or space to discuss here. From the medical perspective, this book acts as a springboard for a deeper understanding of the patient experience of illness, and allows reflection on the way we as clinicians encounter and interpret the illness narratives of our own patients – in both personal and medical education contexts.
Bolaki’s focus on lesser-known works is at the expense of leaving more well-known pieces by the wayside (she briefly mentions but does not return to Margaret Edson’s excellent play Wit in the same chapter as Well – why not explore this play as well, or even side-by-side as a contrast?) However, this is not intended to be a comprehensive textbook of illness narratives but a challenge to the ‘standard’ body of works, and the selection she does include are on the whole excellent for purpose. I was disappointed only by the chapter on the performance art of Guillermo Gomez-Pena, whose relevance to medicine I found tenuous. In addition, this is not a book aimed at the casual reader, and I often found the academic language dense and difficult to read. This is unfortunately likely to be off-putting to those without a background in the academic medical humanities. Nevertheless, it is worth persevering, as this is a fascinating collection of works which has relevance for scholars, artists, doctors, medical students and patients alike.
Atul Gawande wrote in Being Mortal that ‘The chance to shape one’s story is essential to sustaining meaning in life’. Illness as Many Narratives is a thorough and thought-provoking analysis of the multiple ways people have tried to shape their own and others’ stories, and so find meaning in the overwhelming turmoil of illness.
Reviewed by Dr Sophie Fitzsimmons, a Foundation Year Two doctor working in Brighton, and plans to train in psychiatry. She has interests in mental health and medical education, and the ways in which the medical humanities can enrich both of these. Sophie has previously reviewed ‘Brains: The Mind as Matter’ (Profile Books, 2012) for the Centre for Medical Humanities.
Gawande, Atul. 2014. Being Mortal: Illness, Medicine and What Matters in the End. London: Profile Books