Eating Disorders in Childhood and Adolescence

4th Edition

Bryan Lask, Rachel Bryant-Waugh, Bryan Lask, Rachel Bryant-Waugh

• Publisher: Routledge
• Year: 2013
• Print ISBN: 9780415686419
• eBook ISBN: 9781135125394
• Topic: Psychologie
• Subtopic: Abnormale Psychologie

In the fourth edition of this accessible and comprehensive book, Bryan Lask and Rachel Bryant-Waugh build on the research and expertise of the previous three editions. First published in 1993, this was the first book of its kind to explore eating disorders in children and young adolescents, a population that is very different from those in their late teens and adulthood.

The contributors' experience and knowledge have increased and the field has moved forward over the past 20 years. This fully revised edition offers a distillation of current information relating to the younger population, and contains brand new chapters on areas of experience, research and practice including:

• The perspective of a young person going through an eating disorder
• Experiences of a parent
• Updated information regarding advances from neuroscience
• Therapeutic engagement
• Cognitive remediation therapy

Eating Disorders in Childhood and Adolescence offers the reader knowledge, insight and understanding into this fascinating but challenging patient group. It has both a clinical and research focus and will be an essential text for a wide range of professionals, as well as being readable for parents of children suffering from eating disorders.

Part I

Perspectives

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Chapter 1

The sensitivities that hinder and the sensitivities that heal

Kenneth Nunn

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The pain of shame and self-loathing

If you have ever been embarrassed about people seeing you naked; if you have ever felt uncomfortable about being overweight; if you have ever wished you looked different in some way or other; if you have ever experienced pain at the way others viewed you and your body; if you have ever felt your life was not really yours to control — then you may have some capacity to empathise with children and young people who suffer from anorexia nervosa.

The pain they live with day after day is the deep conviction that they are ugly, loathsome, bloated and distended. To be sure, in some this is mild and creates background noise only in their emotional life. But in malignant anorexia nervosa it is an intense, unrelenting, tortured self-concern that renders life unliveable without the most intensive support from those around. For these, starvation is extreme, self-injury is common and death is never far away with casualties at around five per cent per decade of the illness. Seriously delayed growth, brain blood-flow shutdown, osteoporosis (sometimes permanently damaged bones), infertility and unstable heart rhythms are commonplace. Many of these complications are normally only encountered in the Third World or the very elderly. The sort of medications that are usually only needed to settle the overwhelming distress of psychosis are increasingly required to quell the distress and psychiatric complications of anorexia nervosa that are unresponsive to any other intervention.

The eating disorder that is more than an eating disorder

Anorexia nervosa is a disorder associated with difficulties of eating, together with weight and shape concerns. But it is much more. It is an illness that can cripple a young girl’s ability to get through to the world around her about how she feels. She may be ‘locked in’ emotionally. It is also an illness that prevents young girls from understanding how those they love feel about them — others are ‘locked out’ emotionally. It is above all else an illness of communication between the world inside themselves and the world outside — an illness of emotional communication in which they have difficulties expressing and receiving what matters most — their own feelings and the feelings of others.

They have no shortage of feelings, no poverty of emotion and no emptiness of real intentions or motivation. However, feelings are segregated from words, emotions remain all too often disconnected from the tears and choreography of their facial movement. An expressionless, seemingly unconcerned face may mask a tumult within. The usual desires, thoughts and driving forces in young people are utterly captured and held hostage by weight and shape. Like the delusions and hallucinations of a person trapped in the completely dominating world of psychosis, the world of anorexia nervosa is a prison tightly bound by walls of distress at every turn. In the same way, parents may be deeply concerned and this concern may not register or may be misunderstood by children with anorexia nervosa. Parents may be perplexed, bewildered and overwhelmed as to what is happening within their child; sensitive to their distress but at a loss to understand the source of the distress. It is to the sensitivities that may fuel this distress or heal this distress that I want to turn.

A needed pain

The first time I saw a child with hereditary insensitivity to pain, like probably thousands of new medical graduates before me, I was struck by the need for pain. The little two-year-old boy had already injured himself many times and there was a danger he would lose some of his toes and fingers through his injuries before he was ready to go to school. Of course, I knew that leprosy affected sensation in feet and hands and that specific nerve damage might lead to particular insensitivities, but it never occurred to me that a child might grow up largely without pain because of a rare condition and that this inability to feel pain might make the child continuously vulnerable. In the same way, the young person with anorexia nervosa may be entirely unaware of the disease that is destroying them and even of the threat this poses to parents as they are traumatised by their child’s condition. This inability to personally register anorexia nervosa is one of the most perplexing aspects of the illness and increasingly appears to be medically (brain based) rather than psychologically based. It is this inability to see ‘the enemy’, that makes ‘the enemy’ all that more dangerous. The insatiable demand from within about weight, weight loss, shape, the amount and type of food eaten, is so absorbing and overriding of all other concerns that even concerns from loved ones about survival retreat to the background.

A futile pain

At the other extreme of experience, throughout my medical career, in both general and child psychiatry, I have been involved in the treatment of pain, especially chronic pain — the long-term pain that remains unresponsive to the many forms of pain relief that have been so successful in acute medicine. Here the pain may have gone on for months or years. The pain no longer signals acute tissue damage or threat of tissue damage but has become a problem in its own right. Sometimes it signals troubles in the life of the person, past or present. But even where this is so, the pain is yet another burden. Of course, like all my psychiatric and psychological colleagues, I will search out the possibilities that the pain is ‘serving a function’, ‘fulfilling a meaning’ hitherto unseen and of which everyone has been unaware. The reality is, however, that for many of those with longer term pain no cause is found, no meaning made and pain is just pain, quietly, inexorably grinding down its owner who searches for any relief we might offer. Sometimes the immediacy of pain obscures its own origins. We are asked to help these patients cope with pain, even when we cannot make sense of the pain, to provide support in the struggle with pain, even when we cannot eliminate the struggle, and to provide what comforts we can, even when the fundamental comfort of relief from pain is not forthcoming.

Responding sensitively to a futile pain

Strangely, anorexia nervosa is a bewildering mixture of insensitivity and sensitivity, a lack of awareness of their underlying condition that renders them vulnerable and a distress with their shape and weight that is overwhelming. Young people with anorexia nervosa can be exquisitely sensitive to an increase in weight or calorie intake and completely unaware that anything is wrong with them. Parents can be utterly overwhelmed with the distress of their child but also unaware of the medical disaster that has crept upon them by stealth.

How can we know to which distress we should respond in these young girls and their families and which distress we should see as a ‘futile pain’ which only distracts us from what is threatening? How can we help? How can we build treatment around their sensitivities and insensitivities so that it is likely to work more effectively? How can we understand this condition so that parents will feel confident to trust us and not find themselves ‘fighting against us’ and us, ‘against them’? What are the sorts of sensitivities, ‘the pains’, from which they suffer? We may become so concerned about what this pain and distress mean that we forget that sometimes no meaning can be found, or the meanings that are found, are elaborate, ill-fitting interpretations that say more about what we are thinking, and where we are coming from than about the young person with anorexia nervosa. There is a relief that comes from acknowledging that we do not understand but we do care, that we cannot make sense of what is happening but we are not judging, and that we do not have the answer, but we will continue to be available to provide smaller answers to particular difficulties.

The varieties of sensitivity

Most children with anorexia nervosa love their pets — dogs, cats, goldfish and more recently electronic pets and babies. They are deeply distressed if anything untoward happens to them. They feed them regularly. They do not injure them but nurture them lovingly, tenderly and sometimes tenaciously. I have sometimes asked these young people what they would think if someone starved their kitten to death and injured their tiny paws and ankles. They are distressed at even the thought. Then I have said that this is how it feels for us when we see them starving themselves as so many do when overwhelmed with the inescapable distress of anorexia. Of course, there are no clever words that can cure anorexia nervosa anymore than there are clever words to cure cancer. Treatment is a slow, hard slog with a host of obstacles on the road to recovery. But some of the girls remember these words and try to be just a little kinder to themselves as a result.

To see how ‘this might happen to me’ or to those we love, to somehow appreciate it even if we are not really aware of what the person is going through, is called identification in the jargon of psychiatry. It means we feel for ourselves and those we love when we see their distress — we identify with their distress. There is nothing wrong with this. It is the beginning of feeling for others but should not be confused with the feeling for others that is called sympathy or empathy. Identification is the distress that people communicate when first we tell them our bad news. Many people at funerals want to be reassured and comforted by the bereaved loved ones because they become distressed that ‘it might have been them’ or someone ‘close to them’. When we have shared bad news with others this is also the reason why many people tell us the worst story they have recently heard, of which our story reminded them. We of course do not need to hear or want to hear their worst story.

To see someone else suffering, to feel for them and with them in their distress and to register their pain is sympathy. It is to become aware that they are in pain and to want to relieve it. Sympathy is what we often feel when watching starving children on television and we want to relieve their starvation and distress. We feel for them even though we are clear that we will not starve and will not be in their position.

To see someone else suffering and to feel the pain as they feel it, at least in part, is empathy. To experience the discomfort that they are feeling in their situation, the pain in their troubles, and to wince with the embarrassment and heartache they must endure, is to understand in a different way, not merely to identify or sympathise. All of us have been children and distressed as children at some time. When we see children we can feel for them and with them.

Who owns these feelings?

There is a deeper, more difficult to put into words variety of this feeling, which often is an experience very close to empathy. It is the confusion between our own feelings and the feelings of those who are suffering. When we spend time with others, feel close to others, have things in common with others, care for others, especially when they are young and vulnerable, we may confuse our feelings, our thoughts and even our predicaments with theirs. Well-trained clinicians learn to use these confusions in ownership of feelings creatively to help those for whom they care. But they can complicate our care and before we know where we are we can find ourselves caring for our own needs, our own problems and our own predicaments. We are taking on the problems of others as if they were our own, and acting as if their problems were no longer theirs but ours. In short, we are no longer helping troubled young people and their families. We have become troubled ourselves.

The normal tangle of feelings between children and parents

Well, all of this may sound very complicated and pathological but there is a particular type of confusion of ownership of feelings between parents and children, which is very common, very normal and very powerful. Our children may not want to talk with us about their feelings because they are worried. We might be worried but we may be reluctant to talk to our children about our feelings because we do not want to worry them. We as a family might become so worried for each other that we cannot say that we are worried for each other for fear of worrying each other. When we see each other saying ‘we are all fine’, we cannot feel reassurance or comfort. We are not reassured. We are not comforted. I know that I am worried but cannot talk about it. I become worried that they are not talking about their worries. Each person becomes more and more worried to the point that no one is talking. There is a danger that each person in the family may come to the conclusion that the unmentionable problem must be much bigger and more worrying because no one is discussing what is happening.

This tendency to worry about our loved ones' worries is based upon parents caring for their young children and not wanting to worry them; children caring for their parents and not wanting to worry them. It is also based on the belief as a parent that ‘I feel what my child is going through’. It is based upon the understanding of children of what they believe their parent is going through. The problem is that sometimes we as parents get it wrong about our children and sometimes our children get it wrong about us as parents. Sometimes those who are close miss the very obvious things that strangers can see and become convinced of problems that are our own, not our children’s. It is only with time and experiences, both good and bad, that we as parents and children can disentangle our feelings from each other. So when I talk about sensitivities it does not make sense to talk about individuals alone. We all find ourselves aware and unaware, sensitive and insensitive, to the supports and threats, nurture and pain of loved ones around us.

Young people with a problem being superficial or a superficial explanation for the problem?

In anorexia nervosa some people find it easy to identify with these children and young people. On the other hand, more than a few become convinced that this is a self-induced, boutique disorder, in indulged upper middle class girls who are saturated with a materialistic and narcissistic culture that causes women to compete in a senseless rivalry of bodily perfection. Dealing with children and young people themselves moves us beyond this to an appreciation and sympathy that they are victims of an illness that is clearly not self-induced at all and not always middle class; they are often far from indulged or saturated with materialistic lifestyles. They are not simply vain or trying to attract boys. In fact, it would often be a real sign of progress if they were well enough even to contemplate how other people, especially young men, felt about them. They are usually so distressed and self-loathing about themselves that they are unable to consider how others might feel about them. When we see how sensitive they are to the imperfections of their own bodies we can begin to sympathise with these girls.

An emotional malignancy

Anorexia nervosa is not a trivial side effect of an over-indulged western society. It is a malignant disease of children with parents usually trying to do more than could be expected of any parent — damned if they do and damned if they don’t. Some parents will sit on their hands for far too long while their daughter loses weight, not wishing to overreact, minimising the gravity of her weight loss, ignoring what is ‘attention seeking’ and hoping that ‘she will grow out of it’. Others do become obsessed with food and preparing whatever she might eat in the hope of coaxing her back to food and normal eating. Still others, especially fathers, become angry and even violent, feeling helpless and useless in the face of their daughter’s decline. When we are desperate, we do not look as normal, sensible, balanced and open to suggestion as others. If obtaining help has been difficult, if some have been thoughtless or misunderstanding toward us and if miscommunication within the medical system has led to a sense of loss of control and threat to our children, our composure is not as complete as it might be if it was someone else’s daughter. When assessing parents with ill children the first question of the assessing clinician must be ‘how much of the presenting picture is due to a worried parent of a troubled child?’

Of course we require experience to answer this question accurately and helpfully. However, it remains a good rule of thumb: when in doubt, parents are best seen as normal, caring parents who are worried about their daughter.

The sensitivity and insensitivity that save life

When dehydration sets in because drinking is restricted, we must be sensitive to vital signs and much less sensitive to pleas of distress about shape and weight. A young girl can semi-starve for years, almost unnoticed; but just a few days of not drinking and the body will deteriorate quickly. Changes to vital chemicals within the blood — potassium, sodium and phosphate — alter the basic message systems that keep the body’s systems working and the energy production that keeps each cell alive. If life is in danger, there is no kindness in listening to a distress, which will soon die along with the child who owns it. If life is in danger it is kind to replace fluids, though unwanted, restore chemical deficiencies, though unnoticed, and refeed, though food is rejected with an outpouring of distress. There is a time to be insensitive to distress in order to save life; there is a time to be cruel to be kind.

The sensitivity and insensit...

Table of contents

• Cover Page
• Half Title page
• Title Page
• Copyright Page
• Dedication
• Contents
• List of Figures
• List of Tables
• Acknowledgements
• Contributors
• Preface
• Part I Perspectives
• Part II Assessment and course
• Part III Management
• Author Index
• Subject Index