“My Mummy Has a Hole in Her Face”: Living with Facial Eye Disfigurement

Abstract

People living with facial eye disfigurements (LwFED) are often shunned by a society that makes spontaneous judgements based on appearance. This article is a case study of the lived experience of Toni, a 27-year-old woman LwFED, the result of her treatment for ocular cancer. Semi-structured interviews facilitated the exploration of her experiences. We present the findings chronologically but interwoven with themes such as: being strong for others; responding to her partner’s abuse; dealing with strangers; and reinventing her sense of identity and supporting others. We identified institutional perspectives of work, hospital, and family within the prevailing UK that impacted Toni’s experiences of LwFED and argue that institutional perspectives need to be educated about the ordinary person’s daily grind of LwFED to address unrecognised bias and assumption. Only when identified and addressed can the reframing of social, institutional, organisational, and medical understandings and responses facilitate and support the lives of those LwFED.