When the patient becomes the researcher

When the patient becomes the researcher

I entered the world of academia in June, this year, as a researcher, in a bid to make the experience of the eating disorder patient count in science.

The opportunity to draw on the experience of living with an eating disorder, and that of others (see this link), in contributing the voice of the patient to science, is nothing short of magical.

Transition into a researcher, undertaking a PhD in Creative Writing, can be likened to that of lassoing a free-range horse. This period has been crammed with sudden adjustments, awakenings and steep learning curves, with doors opening to a new culture and a challenging environment loaded with opportunity to explore and acquire fresh perspectives. I have become immersed in oceans of literature and scientific papers, discovering research tools, learning about literature reviews, and striving to acquire the  ‘professional speak’ language of science and medicine. All this has been ‘so not me’. I’ve been the patient, the sufferer. Suddenly the blinkers are off. An inner story is becoming an outer story. Now, I am both the researcher and the researched, the participant, the case study. It is exciting.

The Patient’s Story
It is exciting because much about eating disorders – the cause, the optimum treatment – remains a mystery. There is often no rhyme or reason as to why a person develops an eating disorder, and why one person recovers, and another does not. The good news is that science is increasingly becoming aware that the answers will be found in the patients. The patient’s story has been an untapped resource. For too long, their voice was not heard. Today, it is starting to be heard. Giving voice to the patient experience is the focus of my PhD.

I became a diarist at age 11, the year I developed Anorexia Nervosa. My diary became a survival tool, recording the loss and recovery of self. Why and how did this happen?

The Diary
I am writing a book, Using Writing as a Therapy for Eating Disorders, The Diary Healer, as the PhD creative component. This book explores the therapeutic context and possibilities of diary writing, specifically in relation to eating disorders. It will take the reader on a journey, not only with myself, but with others (you may have responded, earlier this year, to this call). To receive the offer in May this year to include the book as a component of a PhD was a dream come true. As my principal supervisor at CQUniversity, Professor Margaret McAllister, said, ‘this is a chance to make your life experience count’. Indeed, it is, on behalf of everyone who has an eating disorder. I want to know if diary writing can connect the self with the body and whether diary writing can help in the regaining and healing of our authentic self.

Loss and Regaining of Self
The idea for The Diary Healer evolved after reading and reflecting on the several decades of diaries that I had written while experiencing Anorexia Nervosa. The disconnection between body and self was striking, causing me to think about  the role of the diary as a survival, healing and recovery tool. I became interested in how other people experienced such disconnection, and in increasing awareness for others. I wanted to explore the potential of diary writing in facilitating a more embodied experience between self and body, first in identifying the condition and secondly by doing something about it. This exploration is the subject of The Diary Healer.

Doing Something About Scarcity of Research
There is a scarcity of research on the value of diary writing in the field of eating disorders; for instance, its role in supporting and encouraging self-discovery, recovery and renewal.

Next week, I will attend the School of Nursing at CQU’s Noosa campus, in Queensland, for my confirmation of candidature presentation. During the decades of living with my eating disorder, I would have had an enormous panic attack at the thought of doing such a thing. But this is my payback time, using my experience of the eating disorder to inform science. I will think of the many people I know today, who are suffering an eating disorder, and I will feel strong.

Thank you for joining me on this journey. We travel together.