The mouth as the gateway to the leaky body: The visibility of internal bleeding in the mouths of people with haemophilia

The aim of this chapter is to explore the lived experience of bleeding from the mouth in people with haemophilia living in Ireland. Despite huge improvements in general health, the mouth remains largely separate from the body in haemophilia care and in the attitudes and experiences of people with haemophilia towards their bodies. Drawing on a qualitative study exploring the lived experience of bleeding from the mouth for people with haemophilia in Ireland, this chapter highlights the significance of the mouth uniquely within the body as the site where the internal becomes visible and where internal bleeding can be seen and becomes immediate and visceral in a way that internal bleeding in other parts of the body does not. Bleeding from the mouth is common in this group and impacts significantly on daily life. This chapter argues that the mouth is experienced differently from other parts of the body. In this context the mouth is the site where bleeding within the material body becomes visible, the boundary through which the body leaks. The chapter starts with an overview of the mouth within haemophilia care in Ireland before focusing on the experiences of people living with the condition in relation to their mouths, oral health and dental care.