Juliet Chenery-Robson 

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.

Closed Eyes

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.

Hands

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:

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Is there a book, poem, film or work of art that best describes your experience of life with ME?

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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.

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Image-Text

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.

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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.

In excess of 70 instances of ME type illnesses have been documented by ME specialist Dr Byron Hyde and his team around the world, with outbreaks being recorded in schools, hospitals, convents, and even whole towns.

In order to illustrate examples of these outbreaks I utilised Google Earth Maps to serve as an additional method of visualising and mapping the impact of ME’s social, medical, and political invisibility upon communities worldwide. The circular format emphasises the gaze of the medical community through a lens or microscope upon a worldwide issue.

Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Susan Sontag, Illness as Metaphor

Through a series of medical images and portraits A Diagnosis of Exclusion explores the alienation, social exclusion and loss of identity prevalent in the shadow of the invisible illness Myalgic Encephalomyelitis (ME). Often referred to as the disease of a thousand names ME affects over 250,000 people in the UK and many thousands more worldwide, yet there is still a great uncertainty surrounding its cause and existence. Trapped in their own unique ‘kingdoms of the sick’, the individuals in the portraits look out at the viewer, seemingly in an attempt to challenge your concept of ME, willing you to understand and recognise the reality of this frequently life destroying illness.

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ME’s medical invisibility results from a lack of a biomedical diagnosis and absence of visibly recognisable symptoms. It is a case of the clinical gaze—both human and technological—being unable to ‘see’ the illness.

Until a medical test is found that verifies the existence of ME, many sufferers will continue to be misdiagnosed, disbelieved, or ignored. The lack of a recognisable pathology for ME has divided the medical community into those who believe ME is a neurological illness and those who assume that patients are suffering from a psychosomatic condition. The photographs within this series illustrate some of the positive medical research that is being carried out in the UK to pinpoint a cause and cure for ME.

Cherry blossom season, Tokyo, Japan.

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If man were never to fade away like the dews of Adashino...

how things would lose the power to move us.

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Yoshida Kenko (1283-1350)