Becoming a diagnosis: An ESRC Better Lives Essay

Sociologist Lauren O’Connell, a postgraduate research student at the University of Essex, holds a scholarship from the Economic and Social Research Council for her doctoral research exploring how clinical diagnosis and treatment shapes the experience of anorexia nervosa. In this shortlisted essay from the ESRC Better Lives Writing Competition, in which PhD students who have received money from the ESRC write short essays about how their research leads too better lives, she details how her own experiences influenced her work.

At 20 years old, four years after I first began dieting, I sought help from a counsellor at a local eating disorder charity. I was a third-year undergraduate living in a student house, and recently my ‘successful’ dieting had been interrupted by a pattern of binge-eating that I struggled to control. I knew my dieting was quite extreme, and I had started to hide its extent from others. I also knew that I was teetering on the edge of being a little too thin.

But I didn’t think of myself as having a ‘proper’ eating disorder. Proper eating disorders were for the girls I read about in magazines who were emaciated and unable to eat. Girls with feeding tubes who deceived their doctors, hid peas under their fork and secretly vomited into plant pots. Eating disorders weren’t for me. But my binge eating, a fear of weight gain, and the great sense of personal failure and shame that came with it, distressed me greatly. I saw the counsellor and explained my eating habits and my concerns that I was developing bulimia, only without the vomiting.

The counsellor suggested that perhaps it wasn’t bulimia I was experiencing, but anorexia. I was surprised. Me, anorexic? I didn’t consider myself thin enough and I definitely liked food too much. I didn’t have the audacity to dare call myself ‘anorexic’, yet I was immediately drawn to the idea. The word felt exhilarating and serious. It took me seriously.

When a medical professional diagnoses someone with anorexia nervosa, the intention is to help. The diagnosis is supposed to assist in better understanding the nature of the individual’s struggles and in providing access to treatment. A diagnosis can therefore feel like a relief to the person who receives it. It can help them to make sense of their experiences, validate and legitimise suffering and offer a point of connection with other ‘sufferers’.

But being diagnosed with anorexia can be problematic, too. The pathology implied by the diagnosis – the sense that there is something wrong with oneself – may lead to feelings of personal shame and social stigma or perpetuate hopelessness. Individuals also sometimes try to ‘hang on’ to the diagnosis through continued weight loss, in order to not lose access to treatment or in hope of retaining the private sense of achievement that it can provide.

For me, the diagnosis powerfully impacted on my sense of who I was and where I belonged in the world. During repeated in-patient admissions where I increasingly distanced myself from my normal daily life and social roles, ‘anorexic’ became a viable alternative that I, to some extent, deliberately sought. The diagnosis acted as a blueprint for who I could become, and this had serious implications for my eating-related distress and how I engaged with treatment. In the long run, it contributed to the prolonging of my struggles.

Of course, many people who are diagnosed with anorexia do not turn out to have experiences like mine. The diagnosis will mean different things to different people, depending on (for example) the circumstances in which they are diagnosed and their understanding of what it means. For many, however, a diagnosis of anorexia can be a significant influence on their identity, because it suggests that they are essentially sick, different and irrational.

My research addresses personal experiences of being diagnosed with anorexia. I am exploring what having a diagnosis means to people, and how they understand and relate to their diagnosis in treatment and beyond. I am interested in how the diagnosis influences their identity, and in turn affects their experience of ‘illness’ and ‘recovery’. Recovering from anorexia involves working at identity; one must let go of an identity that is embedded in a particular clinical disorder, and recreate and negotiate it as someone who is ‘well’. This can be a challenging process which many experience as a personal loss. As part of my research, I am seeking to understand how individuals who are navigating this process make sense of, and draw upon, their diagnosis. The overall aim is to shed light on what the psychiatric diagnosis of anorexia does, and the role it plays in experiences of eating-related distress. This has potential to improve the lives of those living with eating-related distress by better understanding the impact of the diagnostic interventions that are intended to help them. This is important, given the limited success of current clinical interventions. Anorexia is associated with high rates of treatment drop-out and relapse, and as the recent NICE guidelines for the treatment of eating disorders suggest, no specific treatment programme for anorexia in adults demonstrates sustained long-term benefits. There is therefore a need to better understand how clinical procedures – including the act of diagnosis itself – affect the individual and their experience of treatment and recovery.

Shortlisted and winning essays in the series:

• Playtime in the camps | Bobby Beaumont, University of Birmingham
• This land is my land | Holly Chalcraft, Durham University
• Building a better life with dementia | Elyse Couch, King’s College London
• Working relationships | Rosa Daiger von Gleichen, University of Oxford
• Parenting with mental health | Abby Dunn, University of Sussex
• Reliving trauma, relieving pain | Alessandro Massazza, University College London
• The psychology of flooding | Niall McLoughlin, University of Bath
• Becoming a diagnosis | Lauren O’Connell, University of Essex
• The illusion of eternal independence | Chloë Place, University of Sussex
• Tilting at windmills in a climate-changed world | Celia Robbins, University of Exeter

**

WINNING ESSAYS

• Notes on a G-string | Rosie Cowan, Queen’s University Belfast
• Better lives with better toilets | Ian Ross, London School of Hygiene and Tropical Medicine