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Telling the cancer experience: interview with Silvia Rossi

Silvia Rossi, PhD, in her research investigates the link between literature and disease, as well as narrative medicine. She teaches Sociology of Health at the École de Santé Publique of the Faculté de médecine, Université de Lorraine. Here is available an interview with her, hosted on Chronicles of Narrative Medicine, on TemA Cancer project

Q. How is your course on Sociology of Health organised?

SR. My courses are intended for students, from the second year to the master, following a path in public health or medicine field; contents and teaching methods vary according to the class and level, while the aim of the courses is always the same: to offer students a point of view – that of medical humanities – that is complementary to the purely biomedical one characteristic of the rest of their training and provide tools for analysing contexts and situations that allow them to ask themselves about the meaning of their work.

Furthermore, together with colleagues from various disciplines, we are reflecting on how to introduce lectures or courses in narrative medicine and, more generally, literature and health, in particular in the context of the reform of health studies currently underway [1].

Q. In your book Écrire le cancer you analyse the way cancer is written: can you tell us what the most obvious results of this long research project are? Can you tell us what they were, what they are, and if and how the metaphors used to describe cancer have changed over the years?

SR. In the oncology field, the metaphor of war is shared by care professionals and sick people: Susan Sontag noted this in the 1970s [2] and is still true today; when we talk about therapeutic arsenal, or cancer survivor, it is the lexicon of war that is used. A passage in the book The chemical formula of pain by Giacomo Cardaci, published in 2010, illustrates the timeliness of this metaphor:

Instead of machine guns and bazookas, needles and scalpels are used that like bullets pierce your skin or worse what lies beneath; instead of nuclear bombs, chemotherapies that explode inside you like the most powerful grenades, making a clean sweep of everything they find [3].

On the other hand, the metaphor of war is sometimes not enough to account for the complex experience that cancer is: in my doctoral research, presented in the book Écrire le cancer, I became interested in the language emerging from the narratives of the people directly touched by the disease. The analysis of the works published in Italy between 2004 and 2010 – for example, Terzani‘s Another round of carousel [4] or the personal novel by the aforementioned Cardaci – shows that cancer is not always a war; sometimes it is seen as a journey, sometimes it is told through metaphors drawn from the world of sport, sometimes religious language is used. The fact that more and more sick people talk about their illness, together with the evolution of treatments and the improvement of prognosis, are some of the reasons that led to the enrichment of the language around cancer and will contribute to evolve the representation social of this disease.

Q. What do you think is the most functional language for communication with a person who has cancer? And who lived an oncological disease experience? What would you recommend to healthcare providers as best expressive method?

SR. The plurality of metaphors used by sick people to tell their experience shows that there is no “better” language to communicate in the oncological field, but an appropriate language depending on the representations, values ​​and experiences of each one. Furthermore, the language used at the time of the announcement of the disease can evolve and change during the course of treatment; the analysis of the metaphors used in autopathographies [5] demonstrates how “the war on cancer” is the expression used in most cases by patients receiving an oncological diagnosis. On the other hand, in the case of the chronicisation of the disease, this same metaphor may appear inadequate: one speaks then more often of “traveling companion”, of “cohabitation”… To answer your question, I do not believe there is a “more functional language”, but a personalisation of care that also includes language.

[1] In this regard, consult https://www.enseignementsup-recherche.gouv.fr/cid146432/www.enseignementsup-recherche.gouv.fr/cid146432/suppression-de-la-paces-les-nouvelles-modalites-d -etudes-de-sante-publiees.html (in French)

[2] Sontag, S. (1978/79). Disease as a metaphor. Turin: Einaudi.

[3] Cardaci, G. (2010). The chemical formula of pain. Milan: Mondadori.

[4] Terzani, T. (2004). Another round of carousel – Journey through evil and the good of our time. Milan: Longanesi Saggi.

[5] Paraphrasing Ph. Lejeune’s definition of autobiography,

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Epidemiologist and counselor – 30 years of professional life in health care. Classic humanistic background, including the study of Latin and ancient Greek, followed by scientific academic studies, chemistry and pharmacology. First years of career, in private international environment. I worked in medical research, moved to health care organization, getting academic specialization in Epidemiology. Later, in consultancy and health care education. Counselor with transactional analysis orientation. Currently, director of Innovation in Health Care Area of Fondazione ISTUD, an independent not for profit Italian Business School with an humanistic approach acknowledged by the Italian Ministry of Researech.. Active member of the board of Italian Society of Narrative Medicine, tenured professor of Narrative Medicine at Hunimed, Milan, and in 2016, referee for World Health Organization for “Narrative Method in Public Health.” Writer of the book; “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities,” edited with Springer and of international publications on narrative medicine in scientific journals. Last book “The Languages of care in narrative medicine: words, space and sounds in the healthcare ecosystem”. Lecturer in different international contexts from Academy to Public and Private Foundations.

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