Quest for identity: recovering from eating disorders

‘The soul needs a place.’ That quote, by Greek philosopher Plotinus (204/5–270 bce) hangs at the entrance to the inpatient eating disorder service in Todi, Italy, which I visited for the first time in 2006. The service admits both adults and young people for a few months at a time, and I recall my surprise at how little it resembled a hospital; its warm and nurturing – almost homely – atmosphere was designed to provide an appropriate environment to foster recuperation and recovery, to allow inpatients the space to be restored to physical and psychological health and to reconnect with themselves.  

My experience came at the beginning of my clinical doctorate, when I went out into the field for the first time. From the lectures I understood that eating disorders lead the sufferer to reject, or abuse, one of the most elemental ingredients of our lives – food. It is difficult to conceive of a biological function more essential to sustaining life than eating. For nearly all of us, breathing is an automatic process. The same applies to sleep. Eating, instead, requires a degree of deliberate engagement in the acts of gathering, shopping or going to a restaurant. Furthermore, the act of eating mediates between nature and culture, and throughout history human beings have always attributed meaning to food to express social, psychological, political, cultural and religious beliefs.

I was also struck by how eating disorders affect the mind as well as the body, highlighting the importance of the circular connection between these two parts of our selves. It was soon clear to me that people suffering from eating disorders may die as a result of the organic complications of the illness. A general lack of awareness of the illness, in conjunction with the degree of severity that this disorder can reach, was simultaneously both extremely upsetting and fascinating from a psychological perspective.

It is one of the few mental illnesses from which, initially, a patient has little motivation to recover. The link that a patient often establishes between the condition and their sense of identity is characteristic, as is the related feeling that it somehow makes them special, or unique. One of the first steps with a patient is consequently to help them to recognise that unhelpful thoughts, revolving around the body and food, belong to an illness. Psychoeducation about these symptoms helps them to see the disadvantages of suffering from the disorder; there is a direct correlation between an increasing awareness of the condition’s negative effects and the will to recover.

In Italian clinical practice I learnt that offering patients a multidisciplinary and personalised treatment programme is crucial to their recovery. This approach allocates a team of professionals to the patient, who can address every aspect of their condition – organic, nutritional, psychological and educational. Ultimately the patient needs to find his or her own personal reasons to embark on the path to recovery. After this formative experience I decided that I wanted to devote my career to understanding more about it.

Eating disorders most commonly affect adolescent girls and young adult woman, with those between the ages of 15 and 35 representing the majority who receive treatment. They can also occur in boys and men, in older women and in pre-pubertal children of both sexes. Over 725,000 men and women in the UK are affected by eating disorders. Anorexia nervosa alone affects about one in 150 of the adolescent population.

Although there may be some variation in the detail of the clinical presentation related to age and gender, the core features are consistent across the age spectrum. What is being expressed through weight and shape concerns and unhelpful eating behaviour/patterns is essentially a quest for identity, starting with this question: ‘Am I good enough?’ The immediate answer from loved ones is naturally ‘Yes, of course’. The way in which we can reinforce this message, and for those we love to actually believe it, is through a complex personal growth process in which every one of us – parents, relatives, teachers, coaches, professionals – is involved.  

The etiology of eating disorders is multifactorial. Evidence continues to emerge of the importance of social and cultural factors, which relate to body image and peer-media influence. Alongside this, there is now a substantial body of research into the neurobiological and psychological vulnerabilities and sensitivities that heighten the risk of developing a disorder.

I continued to work in other outpatient eating disorder services, and I assisted in the development of new inpatient units in Italy and Malta. During this time I had the opportunity to meet many young people, and noted the sheer quantity and range of rituals enacted on their bodies. They paint, pierce, dress up and manipulate their body in many different ways and are immersed in a mass-media culture that exalts the use of the body as a means to communicate identity, values, status, and also encourages the viewer/reader to consider the body as the basis of happiness and health.

The message and the emotions that they want to express and communicate through their bodies are another essential focus of the psychological work. They display extreme behaviour such excessive dieting, intense physical activity, and self-harm. The attention that they pay to their own bodies can consequently easily metamorphose into an obsession.

After a few years of working in the clinical field I became the Project Manager for a national research project exploring the predictive factors and psychopathological aspects of childhood and adolescent eating disorders for the Italian Ministry of Health. The experience provided me with a deeper understanding of the organisation of the services involved, and the importance of offering a continuity of care between different stages of treatment. This still represents a difficult element, which needs improvement. A smooth transition will decrease the possibility of a relapse, so it is important to make sure this is facilitated.

The neuropsychological aspects, the process of their thoughts, is as important as their content. People with eating disorders seem to have a lack of flexibility in their thinking styles and a strong tendency to focus on details at the cost of the bigger picture. New approaches like cognitive remediation therapy (CRT) seem to help patients to developing more helpful thinking strategies. I am dedicating a part of my job in contributing to the research evaluating the effectiveness of CRT as it appears very promising.

When I moved to London over two years ago I had the honour of working with Professor Bryan Lask at Rhodes Farm, an inpatient unit for children and adolescents with eating disorders, when he was medical director. He was the one who more than 20 years ago with Dr Rachel Bryant-Waugh, Consultant Clinical Psychologist, opened the first unit in Europe for eating disorders in children and adolescents. I owe to them and their conspicuous work what I know about this disorder.

Professor Lask sadly passed away in October 2015, and his death is a significant loss to the academic world. His description of anorexia nervosa as a disorder of paradoxes has always particularly intrigued me; For example, pre-morbidly our patients have been conscientious and compliant but during the illness they are rebellious and resistant; they see themselves as fat when they are thin; feel well when they are ill; feel full when they are empty. They starve themselves but sometimes binge, they are obsessed with food but avoid it. They tend to be popular and successful but have low self-esteem; they appear to be in control and controlling but feel they have no control or are out of control. They look fragile but behave with extraordinary strength and determination; they perceive their tormenting and destructive illness as friend and a comfort. At times they appear to have insight but can switch instantly to a state of illness denial (anosognosia).

In a psychological session with a young girl suffering from anorexia it is crucial to ‘read between the lines’, as what is said is frequently contradicted by reality. An insistence that they are ‘perfectly well’ is common, as is an apparent unconcern with their deteriorating physical condition. The main question I ask a patient to understand the severity of their condition is: How much time do you spend thinking about what you eat and how you look? Often the answer is: All the time, apart from when I sleep. Subsequently, the focus of the work helps them to externalise the illness. Is it you or the anorexia’s voice speaking? This question is often met with hostility, even anger, as they are unable to distinguish between themselves and the disorder. Eventually, however, they will begin to adopt similar language to the practitioner when discussing their condition. The approach is always motivational: they need to feel that they are not being forced into changing, as this will usually trigger a powerful urge to resist.

Despite working in this field for many years, it remains a challenge. The results of my work are often only seen years later, when I receive letters from patients thanking me and stating that – at the time of treatment – they did not allow themselves to openly acknowledge my words, but that they were nevertheless listening. Moments like this serve to reinforce my conviction that I am on the right path.

Today we can confidently assert that great steps forward have been made in our understanding and treatment of eating disorders, but should also recognise that our knowledge is far from complete and that we have yet to identify treatments that are consistently effective. There are emerging treatments such as emotions-focused therapies, cognitive remediation therapies, and yoga and mindfulness-based therapies; early intervention, a motivational approach and multidisciplinary treatment, with the involvement of caregivers, remain the key elements of any effective treatment programme.

The government has recently announced a policy objective of expediting care and expanding services for teenagers with eating disorders. An additional £30m of funding has been specifically allocated to eating disorder services as the result of compelling evidence supporting the importance of a rapid and focused response in effectively dealing with the condition. Support will be offered much more quickly, with an increasing number of patients being seen within a month of referral, or within a week for urgent cases. This position is very encouraging, and holds real promise.

To quote Georges Bernanos, ‘When the youth cool off, the whole world will chatter their teeth’. We all need to try to respond to the ‘call’ of young people. Parents need to be informed of the defining characteristics of their children’s difficulties, and to remember that they are an essential ally in the prevention and treatment process.

I hope that progress in research and treatment will help us to raise young people who appreciate themselves and their own bodies, and treat them with respect.

- Dr Lucia Giombini is a Chartered Clinical Psychologist and Associate Fellow of the British Psychological Society. She currently works as Highly Specialist Clinical Psychologist at Rhodes Wood Hospital, Partnerships In Care, London. See www.luciagiombini.com.

References
Lask, B. & Bryant-Waugh, R. (2013). Eating disorders in childhood and adolescence (4th edn). London: Routledge.
Lask, B. & Frampton, I. (2009). Anorexia nervosa – irony, misnomer and paradox. European Eating Disorders Review, 17(3), 165–168.