Published on behalf of Hope Do, UC San Diego Chapter
When considering the term “modern-day medicine,” one may think of technological advancements and cutting-edge research in state-of-the-art hospitals. Individuals with a knowledge of Western medicine may be more inclined to define it as such, with regards to their view of the medical system. However, that perspective of modern-day medicine leaves much to be desired, especially regarding cultural influence and the way in which an individual internalizes and copes with an illness; this phenomenon is known as the illness experience or illness narrative.
In his book The Illness Narratives: Suffering, Healing, and the Human Condition, anthropologist Dr. Arthur Kleinman describes the illness narrative as “a story the patient tells, and significant others retell, to give coherence to the distinctive events and long-term course of suffering”. The undertaking of such a narrative is necessary to not only encompass and understand an individual’s personal experience with a chronic illness or equivocal experience of affliction, but to also explore the different avenues of the healthcare system’s response. These illness narratives play an important role in enriching our understanding of essential facets in an individual’s illness experience, usually underlined by cultural and socioeconomic factors. Too often perceived as subjective accounts, and taken at lesser value when addressing illness and disease in the human body, these stories and lived experiences play a crucial role in addressing symptoms and illness in tandem with more direct biomedical approaches.
But what exactly is that biomedical perspective, and how does it compare to the cultural richness and identity of the illness narrative? Biomedicine is defined by Kleinman and Dr. Robert Hahn in Biomedical Practice and Anthropological Theory: Frameworks and Directions as an approach to medicine that focuses on the biological and physiological processes of the human body. Simply put, biomedicine focuses on the disease and “where things hurt.” One may think of it as the traditional office visit that ends in a prescription and light recommendations. As biomedicine is so deeply integrated into the culture of Western medicine, people well-acquainted with biomedicine may perceive it as the best and only way to approach healthcare and healing.
On the other hand, an illness narrative within a medical anthropological context focuses not on “where things hurt,” but rather on “hows” and “whys” of the illness, which may and often includes societal, cultural, and personal elements. The structure of an illness narrative mirrors that of a story crafted through conversations and analysis, following the timeline and thoughts of the individual patient’s story. Consequently, metaphors and common themes or lines of thought often permeate the course of the narrative, including the patient’s healing process and the external factors affecting that process. An example of an illness narrative is seen in excerpts of Medical Anthropology by Robert Pool and Wenzel Geissler, an anthropological study of euthanasia conducted in the Netherlands. In this excerpt, we take a brief look into the illness narrative of one of the study participants, Max, who has just been diagnosed with cancer and recently completed chemotherapy. Here, readers not only vicariously live through Max’s “sobering” diagnosis and treatment, but also gain access to his inner thoughts about his future and euthanasia. The narrative follows Max as he requests of his doctor, “I don’t want to become a Biafran, or someone from Buchenwald or Auschwitz, emaciated, and I don’t want to suffer pain” (Pool 58). The colloquialisms and little anecdotal annotations included in Max’s narrative present a unique view of the same process that could be summarized as “patient with small-cell lung cancer, undergoing chemotherapy.”
Through the intersection of traditional Western medical and medical anthropology lenses, patients and healthcare professionals may build a more holistic and understanding perspective of chronic illness. The direct approach that biomedicine offers allows for straightforward diagnosis and treatment, while the illness narrative brings in a different culturally-driven approach to healthcare that works to acknowledge the patient’s experiences as part of that process rather than just extraneous stories added for cursory context.
