Week 3 Reflection: Illness Narrative
How do we make sense of illness and pain? In Bruell’s documentary Oli Otya? Life and Loss in Rural Uganda (Bruell, 2020), western physicians attempt to treat a rural Ugandan woman, Teddy, covered in severe burns. On a constant feed of morphine, she is in chronic pain, becoming delirious, and developing pneumonia. We learn she is a victim of arson, having rejected the advances of a local man towards her teenage daughter. The physicians treat the disease of the woman’s physical distress, but the illness narrative from the patient’s perspective (Kleinman, 1989) motivates the sense-making by which she and her family reconcile what happened, and seeks to absorb the individual suffering into more culturally-nuanced communal palliative care. The arson gives the symptoms shared meaning for both patient and caregiver.
But with the morphine running out, there is also a treatment narrative of structural violence and frustrating bureaucracy (Farmer, 1996), creating a lethal delta between care and need. The urgent drugs are over two hours away, with delay a prolonging exacerbator of suffering for both patient and physician. The physical pain is now compounded by the organizational pain motivated by lack of preparation and infrastructure. Teddy doesn’t survive her injuries, but her case is a fatal example of shared cross-cultural sense-making between localized events and structural deficit (Kleinman, 1989). Might she have been made more comfortable in her final moments? Teddy’s symptoms provide a frustrating illness narrative which heightens our empathy, provides urgency to our response, and positions the burns as violence inflicted upon not just her as an individual, but also her family and the mutual support of her caregivers.
References:
Bruell, L. (2020). Oli Otya? Life and Loss in Rural Uganda. [Video file]. Retrieved from: https://canvas.upenn.edu/courses/1781220/pages/week-3-required-video-1-17-06?module_item_id=29900550.
Farmer, P. (1996). On Suffering and Structural Violence. Daedalus , Winter, 1996, Vol. 125, No. 1. [Digital File]. Retrieved from https://www.jstor.org/stable/pdf/20027362.pdf.
Kleinman, A. (1989). The Illness Narratives: Suffering, Healing, And The Human Condition. Basic Books. [Digital File]. Retrieved from: https://canvas.upenn.edu/courses/1781220/files/133613891?module_item_id=29900548.
