The Sounds of Pain : An ethnography of musicians living with migraine in Uppsala

Abstract: Migraine is an extremely common and disabling disease that affects three times more women than men, and is characterized by recurring migraines comprised of disturbances in sensation perception, intense head pain, nausea, and increased sensitivity to light and sound that can last from several hours to multiple days. Currently, there are no cures for the disease, no official social services that can help a person to handle living with it, and limited studies on its mechanisms or impact on a person’s life. One of the reasons for the low priority handling of migraine, is its stigmatization as a disease of hypersensitive women of weak moral character. To break this stigma, awareness of the severity of episodes and their effects on people’s daily lives is necessary. However, communicating experiences of highly intense invisible pain shrouded in prejudice is difficult, and rational language cannot reach every aspect of it. For this master thesis project, I studied migraine from a medical anthropological perspective, focusing on the life experiences of student musicians between the age of 20 and 30 living with regularly returning migraines in Sweden. I aimed to connect the sufferers’ somatosensory experiences of migraine to their experiences regarding its perception in Swedish society, and relate these to anthropological phenomenological theories of embodiment, wellbeing and illness narrative. Rather than letting words alone define their pain encounters, I explored how my participants expressed themselves via music, theatre, and affects, through semi-structured interviews and a group workshop where participants conveyed their migraine experiences using their bodies and musical instruments. In the first part of the thesis, I discuss how my participants translated migraine pain into music, theatre, and affects, and show that a combination of these modes of expression can provide a more complete understanding of migraine experience. In the second part I explore how my study participants experience migraines as relating to stress, show that the relation is interdependent, complicated and affective, and suggest that a view of stress as a cause for the disease might, despite its limited practical use in sufferer’s lives, aid its legitimization as an illness that can, in principal, affect anyone. Together, the findings illustrate how ordered discourse can fall short off conveying extreme pain and how attunement to alternative forms of communication can provide insight beyond the bounded premises of language.