How to learn from stories of disease, in three simple steps
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Despite the veneer of scientific objectivity, medicine and the medical sciences are built on stories. From therapeutic emplotment and narrative reasoning in clinical encounters (e.g. Cheryl Mattingly’s work) to patient histories and illness narratives (e.g. Arthur Kleinman) to the metaphors we use to describe disease (e.g. Susan Sontag, Emily Martin), stories at once help us to improve health outcomes and can be some of the biggest barriers to doing so. They come in many forms, from movies to newspaper articles, blog posts to books.
Two stories of disease that juxtapose in an unexpected way are Stanley Ulijaszek’s Swimming, Leptospirosis and Me: An Autopathography, and Siddhartha Mukherjee’s The Emperor of All Maladies: A Biography of Cancer. The first, a tale of infectious disease recounted by a patient in the UK, the second a story of non-infectious disease recounted by a clinician-scientist based in the USA. Both equally polished and compelling, both well-researched, carefully-narrated stories that connect with the reader through human emotion and experience. Yet both entirely different.
The value of such stories as educational materials is unique: people who research, treat, fund, insure, advocate for, and care for patients with these diseases, as well as patients themselves, could benefit from immersing themselves in these stories. Is it enough to just read them, though? Is there a way to engage more actively with these sorts of stories, to think critically about them and learn more from them as a result – without having to sit through a formal tutorial on the subject?
Upon reading each story (and upon reading each section of a larger work), readers could start by reflecting on three questions:
(1) What can I learn from this story that is relevant to my current work? This question can help a reader to improve, inform or shape their practices and approaches to this disease into the future.
(2) What has surprised me about this story? This question can help the reader to unpack their own assumptions about the illness, assumptions that may be barriers to improving outcomes or finding innovative ways forward.
(3) What’s missing from this story? This question can help the reader to think about the point of view of the author, and to hold space for alternative perspectives and experiences that might arise in other gender, cultural, geographical, temporal or economic contexts.
