Health and social care professionals can learn a lot from contextual personal experience, and Chloe Atkins offers a rare insight which bridges academic and lay discourse. An auto-ethnographic account of her experiences of debilitating illness, the powerlessness and frustration of not being able to achieve a diagnosis, and the often negligent responses of the Canadian health system, the book offers many lessons to learn. My Imaginary Illness is not an exploration of one particular condition, it is an account of the phenomenology of illness and the professional response. Atkins explains that her book is the story of her ‘immersion into illness’, incorporating reflections about ‘the social construction of gender and illness, the practice of medicine, the illness experience, and the social exclusion associated both with the stigma of mental illness and with gross physical impairment’ (xxv). I enjoyed reading this book despite the anger it provoked in me – it reads like a novel, with the additional advantage of well-placed reflective insights.
Atkins began experiencing episodes of significant paralysis at 21 after a routine operation, and certainly efforts were made to find out why; however, at some point her symptoms were put down to ‘functional’ rather than ‘organic’ origins – meaning that they were diagnosed as psychosomatic. The disinterest of her family was taken into account as further evidence of her culpability. For years, each time Atkins experienced a health crisis, and doctors began to search for reasons and effective treatment, something would happen and the level of care would dwindle and staff would disengage, believing that she was somehow intentionally ill. This book shows how damaging medical records can follow people throughout their lives, affecting their care – an imposition that many people diagnosed with physical and mental impairments experience when they engage with some sort of service.
Atkins brings to light the ambiguities present in medical diagnoses, and how patients’ credibility is diminished when symptoms are considered to be psychological rather than physiological. The particularities of the disease she is eventually diagnosed with are overshadowed by the significance of professional paternalism and authority; the overarching culture of assumption prevailing over ambiguity. She discusses the Cartesian mind/body dualism in terms of professional knowledge and perspectives, and shows how this can be so problematic and damaging.
Atkins argues that this is down to what she calls the ‘liberal’ notion that the individual is the ruler of their own destiny and therefore can be blamed for symptoms that medicine cannot categorise:
Since the late nineteenth century, medical capacities have increased exponentially, making it seem that all symptoms are transparent to the medical gaze. Any symptoms that seem implausible or impenetrable thus become suspect. The logic is unassailable. Because medicine can grasp all that it sees, anything that it cannot grasp therefore doesn’t exist … The confluence of a medical culture that is all-knowing and a societal tendency to view the individual as the vessel of all possibility means that it becomes too easy to blame patients for symptoms that are seemingly inexplicable. (xxv)
She describes being referred to as a drain on the system, an example of the rhetoric we hear all too often, when she reports that ‘doctors began to hint that they needed to consciously “gatekeep” my access to health care resources, since my sickness was not real and health care was provided at public expense’ (39).
At the core of her argument, in my opinion, is the concern that certain manifestations of disease, whether conscious or unconscious, are disregarded and considered untreatable. Atkins relates this concern to historical and cultural contexts and shows where these ideas originated, providing useful analysis about the evolution of evidence-based medicine and how it relates to clinical ‘objectivity’:
Medicine’s belief in evidence-based practice does not mean it is devoid of prejudicial views and behaviors that can greatly impair its seeming objectivity. In fact evidence-based medicine can reinforce clinical and cultural stereotypes because it does not take into account those symptoms and cases that fall outside statistical norms. (xxviii)
This, she argues, reflects the assumption that people can be either mentally ill or physically ill; each requiring treatment by different clinical staff. Nevertheless, Atkins points out that her survival is both in spite of medical treatment and because of it. Her eventual diagnosis of Myasthemia Gravis allowed her to access treatment that ameliorates the symptoms to some extent. Despite the debilitating episodes of illness and abandonment that Atkins experiences throughout the book, the reader is made aware of her strengths and the positives in her life; she falls in love and raises a family as well as completing a PhD and forging an academic career. Furthermore, she manages to secure the support of some engaged and helpful friends and clinicians along the way; resulting in Bonnie Blair’s Foreword describing the story as having a happy ending.
The final chapter of the book is a clinical commentary by Brian David Hodges, a professor of psychiatry. Although this could be disappointing to some readers who may prefer the writing to resolve more about the diagnosis of rare conditions, I feel he is a good choice for the discussion because he examines the overarching messages that professionals should learn from Atkins’ experiences. He suggests that doctors should accept ambiguity more, that the preoccupation for rapid diagnosis and cure impedes relationships with patients – whereas diagnosis is equivocal, always a shared creation. He critiques the common practice of patient objectification on behalf of clinicians, and he acknowledges the fundamental need for empathy and trust. Importantly, he points out that all symptoms should be considered significant:
The interrogation needs to be about the person’s behavior certainly, but also about the circumstances … Categories such as factitious disorder, conversion disorder, or Munchausen syndrome – disorders in which unusual physical symptoms are assumed to have psychological origins – are often used to dismiss patients from care rather than engaging them in treatment. (166)
My Imaginary Illness is an interesting and often distressing story that demonstrates the potential for harm in the power disparity between professionals and patients. It is a story that absolutely needed to be told.
Sociology Department, Lancaster University, Lancaster, UK
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© 2015, Rebecca Fish
http://dx.doi.org/10.1080/09687599.2015.1066971