This project explores the visualisation of the invisible illness ME (Myalgic Encephalomyelitis). Through a combination of photography, text, audio, SenseCam, and family album photographs, the work employs participatory practice and metaphor to represent ME’s physical, social, medical, and political invisibility.
The portraits of ME sufferers with eyes closed offer a metaphorical representation of their invisible illness and lives lived in the shadows of social exclusion, misdiagnosis, and loss of identity. Bringing sufferers into the light through portraiture enables an acknowledgement of their existence and suffering, the closed eyes acting in similar fashion to Barthes’s ‘punctum’ opening viewers’ eyes to deeper interpretation: “I see, I feel, hence I notice, I observe and I think” (Barthes, 1981).
The images invite the viewer to invest the portraits with their own eyes and to look at life through the eyes of the ME sufferer. By closing their eyes, they ask the viewer to open theirs. The closed eyes also reflect ME’s medical invisibility; owing to the clinical gaze’s misdiagnosis of the condition and its failure to locate identifiable signs that would signify a root cause for the illness, leading it to be classified via a ‘diagnosis of exclusion’.
Loss of sight can also be interpreted as something healing or creative, to the opening of the ‘third eye’ of ‘inner sight’. Missing eyes are symbolic of the potential transformation of one form of consciousness—or one form of ‘seeing’—into another. This refers to a ‘sight’ and consciousness that is more dependent and responsive to an inner vision than to sense perceptions. Therefore, the portraits’ closed eyes also reflect the ME sufferer’s ability to create inner worlds, where they find the strength and wisdom to cope with a life disabled by illness.
Together with the eye, the hand, and its fifth sense of touch, is our main source of contact with the physical environment. Hands are part of our communication system and their ability to communicate in not only words, via sign language, but also emotions, is unique to humans. In these portraits of ME sufferers’ hands transparent cubes are held out to the viewer with walls composed of the visualisation of answers provided to the question:
Is there a book, poem, film or work of art that best describes your experience of life with ME?
The images invite the viewer to decipher the answers given and serve as an alternative method by which to enter the hidden world of the ME sufferer and share their illness experience through subconscious connections.
Objects can serve as shared reference points or powerful physical metaphors that encourage viewers to engage deeply and personally with a specific object. Therefore, when images of seemingly ordinary everyday objects are isolated in photographs, this focal point can trigger an internal dialogue of personal connotations in the viewer—related to an empathetic experience beyond the frame of the image.
Drawing on participant’s conversations and textual illness narratives significant fragments of their everyday lives have been isolated as still life images, bringing personal experience from the private into the public domain. In keeping with research aims the juxtaposition of text, in the form of extracts from participants’ illness narratives, provides not only a shared authorship and form of empowerment for the ME sufferer, it also directs the viewer to a reading of the photograph indicative of the sufferer’s lived experience.