Attempting to visualise an illness which is by its very nature invisible was always going to prove challenging. Although photography has often been used to communicate the non-visible, ME has not been explored visually in any great depth. Being a complex disease with no visible signs, but rather a collection of symptoms, photography cannot simply record ME. Instead it requires a more metaphorical approach, one that reflects ME’s many layers, i.e., confusing and fluctuating pattern of symptoms; lack of visible outward signs of illness; disbelief from certain quarters, including some doctors, that ME exists as a neurological illness; controversy as to its cause and treatment; and no known cure (Bell, 1990; Shepherd, 1999).
Figure 1: Emilia: Invisible, 2008
It is also important to note that the chronically ill ME sufferer experiences invisibility on four interlinked fronts: physical invisibility, social invisibility, medical invisibility, and political invisibility. For example, physical invisibility is experienced when, unable to meet cultural expectations (i.e. work, education, family) the ill person’s sense of value in the world becomes oppressed, and this oppression is intensified if their illness appears invisible to others. This can then lead to social invisibility if the ME sufferer discloses their illness situation and subsequently faces social rejection by those that do not accept that their illness is genuine. Medical invisibility is closely linked to social invisibility. As regards ME, it 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. Overreliance on laboratory tests and visible pathology, physician ignorance, and lack of research funding, all help contribute to the cloak of medical invisibility that surrounds ME. Medical and social invisibility can also lead to political invisibility, since with no perceived visible social or public health problem the state ignores the care needs of ME sufferers (Wall, 2005: Ware, 1992).
My own interest in visualising ME began when my daughter, Emilia, developed the disease aged 13 years. Akin to many other ME sufferers, Emilia’s illness was often judged by outward appearance alone, and she soon became the victim of suspicion and derisory comments, such as: “But you don't look sick;” or “You are just faking it so that you do not have to go to school.” It was ME’s aura of disbelief and misconception that motivated me to pursue both an MA and a PhD in order to explore whether photography could help render this invisible illness ‘visible’ to a sometimes-disbelieving audience.
Trapped for months at a time within her room, suffering from severe pain, excruciating fatigue, and unable to attend school or socialise with friends, eventually caused Emilia to become depressed, anxious, and withdrawn. Deciding against straight documentary-style portrayals of my daughter’s illness, I explored metaphorical substitutes for symptoms and emotions by photographing the everyday objects and spaces that resonated with our lived experiences of illness. To expand upon the personal, I then photographed other ME sufferers within their homes. These images evolved into the portrait series Kingdoms of the Sick (2008-ongoing).
Figure 2: Lucy's Kingdom, from the series Kingdoms of the Sick, 2008
Part 3 of this blog will explore how I developed my use of portraiture during my PhD to include photographs of ME sufferers with eyes closed.
Chenery-Robson, Juliet (2015) Portrait of an Invisible Illness: The Visualisation of Myalgic Encephalomyelitis through Photography and Text with Participation from ME Sufferers. PhD thesis. University of Sunderland.
Bell, David S. (1990) The Disease of a Thousand Names: CFIDS: Chronic Fatigue/immune Dysfunction Syndrome. Lyndonville: Pollard Publications.
Shepherd, Charles (1999) Living with ME: The Chronic/post Viral Fatigue Syndrome. London: Vermilion.
Wall, Dorothy (2005) Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome. Texas: Southern Methodist University Press.
Ware, Norma C. (1992) 'Suffering and the Social Construction of Illness: The Delegitimation of Illness Experience in Chronic Fatigue Syndrome', Medical Anthropology Quarterly, 6(4), pp. 347–361.
Photographs copyright: Juliet Chenery-Robson