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Body language

We have an epidemic of eating disorders on our hands. The Mental Health Foundation estimates that one in 20 women will suffer some symptoms of eating disorder. One in 100 will need medical treatment. Of these, 20 per cent will die and many more will relapse or never be cured. While anorexia has existed in medical literature since 1868, it was rare up until the middle of the 20th century. From the 60s onwards, it has spread like a virus through wealthy and developed countries (it’s rare to nonexistent in the Third World), mutating to incorporate bulimia (binge eating followed by self-induced vomiting up to 30 or 40 times a day), compulsive eating (massive overeating without vomiting) and – in the past decade – bulimia with other impulsive and destructive behaviours including self-harm (cutting or burning parts of the body), drink and drug binges, and sexual promiscuity. The Eating Disorders Association now takes between 5,000 to 10,000 calls a month on its helpline.

This is a girl’s problem. While anorexics and bulimics exist in both genders and at all ages, the overwhelming majority are female and young – the core age range is 14 to 25 – which accounts for much of its horrible glamour. In spite of the scale of the problem, it is one of the most poorly understood and enigmatic of all mental-health disorders.

Gemma, now 22, developed anorexia at one of the key trigger points for eating disorders: the onset of puberty. (The other is leaving home for the first time. Other big life changes associated with loss are also common triggers, including parental divorce, changing school, or bereavement.) ‘I can remember watching a documentary about Karen Carpenter on TV when I was only 10. I’d never even heard of eating disorders, but for some reason, it rang a bell with me. Deep down I felt some kind of recognition with her anorexia.’ Her problems began the following year. ‘I had always been a hypersensitive child. I was quite popular at school, but I felt overwhelmingly lonely. I wanted to be special, indispensable, the one that everyone turned to with their problems.’ She began with mini-fasts. ‘I’d stop eating completely for a couple of days at a time. My friends all noticed and gave me lots of attention.’

Gemma couldn’t starve herself completely for more than a few days ‘so I developed a new idea. Instead of eating nothing for a short time, what about eating just a little bit all the time?’ Within a few weeks she had lost a stone. ‘My life revolved around calories and meal plans. I was obsessed.’

The rigid structure of her eating plans and the sense of control over her life that it gave her were irresistibly attractive. Lunch was reduced first to half a jacket potato, then to three slices of tomato. She fought to deny her hunger, drinking six cans of Diet Coke in one go to feel full up. ‘If I decided I could eat at 7pm, I’d try to push myself to wait until 7.30pm or 8pm. I’d take a mouthful of food, then see if I could wait two minutes before I took another one.’

She lost more than 3st in three months, taking her weight below 6st. ‘I was hungry and freezing all the time. I had radiator burns all over my body from lying against them trying to get warm.’ Her family, whom she describes as ‘close and loving’, was overwhelmed. Her mother couldn’t speak to her without crying. ‘I was horrified about what I was doing to them. But in a way, that made me feel more unworthy than ever. I deserved to fade away to nothing.’

Rosemary, now 27, suffered from anorexia for 11 years. There is a history of depression in her family, and at 15 she was dogged by feelings of sadness and futility. She was also struggling for autonomy in a strict family. ‘I didn’t get on with my mother – we had always clashed. She was full of anger, and at the time I felt that I hated her. But I couldn’t express my feelings. I internalised them.’

Anorexia can be described as an inappropriate expression of overwhelming emotions and conflicts. Rather than shout, scream, ask for what she wants, or say no to what she doesn’t, the eating-disordered girl turns the conflict in on herself. ‘One day I realised I felt much better and tried to work out why. I hadn’t eaten that day and I fixated on that as the reason for my improved mood.’ A decade of absolute despair followed. ‘Previously I’d been anxious about so many things – about illness, death, my family and my fear that nobody liked me or ever would. Now I only thought about one thing: food, and not eating. At first it was such a relief not to worry about anything else. The eating disorder started as a coping mechanism to help me avoid my other problems. But in the end it became my biggest problem of all.’

These are just two snapshots of routes into anorexia. There are many thousands more, all different. They illustrate the difficulty of analysing, understanding or treating eating disorders. Is anorexia caused by a genetic predisposition? By an ‘anorexic personality’? By family dysfunction?

According to Dr Sarah McCluskey, who treats eating disorders at The Priory clinic, there is never a cause, but rather a jigsaw of causes. ‘In this jigsaw there may well be a dysfunctional family, a family history of eating disorders, key trigger events, abuse, trauma, and fear or confusion about sexual maturation. In one person, the family-dysfunction piece of the jigsaw may be large, with some other factors making up a smaller part. But in another, external triggers such as bereavement or illness are the big part.’ The disorder is badly named, because eating isn’t the problem, but a way of avoiding other problems. Some therapists call it ‘a self-esteem disorder’ because one of the few traits common to all patients is a chronic lack of self-worth.

‘You start with a certain kind of personality, which is probably just the way the child is born,’ says Dr Dee Dawson, who treats eating-disordered children and adolescents at her private clinic, Rhodes Farm in London. ‘They may be particularly anxious or sensitive. They are often “model children”: well-mannered, high-achieving, and popular. They are almost always non-confrontational. When the eating disorder gets hold, it is a terrible shock for the family. They typically say things like, “But we’ve never had a day’s worry with her.” The personality alone doesn’t cause the disorder. There is always some kind of additional problem. In some children it’s the normal, unavoidable problems of puberty and growing up: popularity, family arguments, academic pressures and sexual development. In others, there is more serious trauma or family dysfunction.’

The multiple causes of eating disorders explains why most girls with similar problems or family backgrounds don’t develop them. They also highlight the problem of treating the many thousands who do: treatment has to be tailored to every individual case and address all the different ways the disorder starts and develops. And eating disorders are notoriously difficult to treat.

Treatment itself is often controversial, scandalously inadequate and confusingly varied. There are still only a tiny number of NHS inpatient centres – even in London there are only two – with slightly more specialist day-care centres. In Wales and the south-west of England, there are none. The rest of the country has patchy, isolated services. Treatments vary, but a programme of re-feeding combined with some kind of ‘talking therapy’ to deal with underlying emotional issues is the standard model.

A larger number of private clinics offer treatments ranging from the addiction-model 12-step approach, through intensive psychotherapy with the whole gamut of medical, New Age, conventional and alternative treatments in between.

Attitudes to treatment are as various as the treatments themselves. Some centres provide authoritarian regimes where patients are ‘punished’ for not eating by withdrawal of privileges, such as use of the phone. Others allow patients to dictate their own pace and model of recovery. In some cases, the emphasis is on physically re-feeding. In others, it is on therapy. All treatments have a high relapse rate. Recovery rates – classified as freedom from behaviours after five years – for the best, most extensive and long-term treatments are 65 per cent for anorexics. Overall, about one third recover, one-third remain vulnerable but manage their disorder well, and one-third don’t recover and either develop chronic disorders, wrecking their health, relationships and employment prospects, or die.

The St George’s Eating Disorders Unit, based at Springfield Hospital in London, is the biggest specialist NHS eating-disorder unit in the country, with a total of 40 beds for inpatients, and an extensive outpatient centre. Inpatients are the most severe cases, and the most physically and psychologically damaged.

St George’s is the gold standard of current treatments, with a large, multidisciplinary team of some of the best-trained and most experienced specialists in the country. It’s the kind of treatment centre all eating-disordered patients should have access to, but very few do. What happens there is unusual. With its big team of medical doctors, psychotherapists, occupational therapists, social workers, family and relationship therapists and specialist nurses, it is one of the few places where all the multiple, complex problems of eating disorders can be treated at once, and where it is possible to build a complete picture of the causes, development and treatment of the modern epidemic.

I am allowed to sit in on the weekly ‘ward round’ – a case conference with the patient and all the members of her treatment team to discuss her progress. In practice, this means one very small girl sits facing up to 17 professionals. To me, it looks intimidating and heartless. But the founding principle of treatment here is ‘alliance’. Inpatients are there by choice. They have agreed to participate in the programme, and Professor Hubert Lacey, who heads the unit, insists that everyone involved in the treatment is equal – therapists, nurses, himself and the patient.

‘Treatment doesn’t work until and unless the patient wants it. She has to take responsibility for her illness and for her recovery, and the programme is designed so she can’t abdicate that. It can seem intimidating to walk into the room with all those people, but it means we aren’t discussing her behind her back. She’s there as an equal party, able to participate and contribute.’

Before she comes into the room, separate members of the team give a summary of their report. A doctor briefly describes the chain of events which apparently precipitated her disorder (bereavement, illness, family conflicts). What she has drawn in art therapy may be shown and discussed. How she has responded in the group discussion sessions will be noted (‘This week we talked about loss. She sat staring at the ground with tears rolling down her face, but didn’t speak.’) Her psychotherapist will raise any issues that seem to be progressing or unresolved, or the effects of ‘transference’ of the patient’s history and emotions on to members of the team (‘She’s angry because her key worker went on leave for two weeks.’) Her social worker and family therapist will discuss her background, any contact with the family, and whether her social/employment/ study network beyond the hospital is a positive one.

Her key worker – the specialist nurse responsible for her day-to-day care – will give a summary of eating and any other ‘behaviours’, such as self-harming, vomiting or manipulating food. At the outset, St George’s informs all inpatients of a set of non-negotiable rules, or ‘appropriate boundaries’. These include no behaviours, a commitment to work at the recovery programme, and a target weight which is worked towards in agreed weekly increments. A patient who breaks those rules is placed on a ‘time-out’ and sent home for a week to consider whether she will re-commit to the programme. If she breaks the rules repeatedly, she is discharged from the programme.

I watch a steady stream of girls file in. They are all aged between 18 and 30. They all look younger. Some of them are aggressive and angry. Some are quiet and terrified. Everything about the way they look, sit and speak telegraphs pain. I’m surprised by how emotional I feel as I listen to them. I want to do something – anything – to soothe them. Eating disorders are surrounded by myths and misconceptions: they’re about vanity, they’re ‘self-imposed’, they happen to silly girls who have got out of control with their silly diets. All wrong. Watching and listening to them, even for a few minutes, it isn’t possible to entertain any of those myths. In the most deliberate and inescapable way, the girls are using their bodies to ask for help.

When time-outs or admonishments are being administered, I can’t believe how the team can be so tough in the face of such overwhelming distress. Often, the time-outs come after a patient has admitted to behaviours rather than been caught out. She can’t believe she is being ‘punished’ for being honest. Others, who haven’t reached their target weight, are rigid with fear that they might be sent home. They know how fragile their recovery is and they are terrifyingly dependent on their carers.

Chris Prestwood is the nursing services manager. In his early forties, he has 16 years experience. He acknowledges that his role in the team is often to act as a ‘father figure’. ‘We have to have boundaries, and we have to stick to them. It’s what the girls need. It makes them feel safe.’

‘Safe’ is a word that recurs over and over when specialists and patients alike talk about eating disorders. ‘Here is a place where there are appropriate boundaries. Where people do what they’re supposed to, and what they say they will do. I had one patient whose mother was a very loving and well meaning “60s” mum. Her parenting model was to give her daughter total freedom to do whatever she wanted, whenever she wanted. That poor girl. Effectively, she’s had no parenting at all. She was desperate for boundaries. Anorexia gave her a sense of control that she’d always been lacking.’

Often, patients are discharged from the programme, or discharge themselves, long before they have recovered. Still painfully underweight, desperately unhappy, boiling with anger and pain and hell-bent on their own destruction. How can they just let them go? What happens to them? ‘They often come back. It’s common for girls to be in and out of here three, four times. There’s no point in them staying until they’re ready, but each visit helps them get a bit more ready.’

At the start of her inpatient stay, every girl is assessed and a programme devised. There are two main programmes: one for ‘restrictive’ eating disorders, patients who are anorexic and severely limiting the quantity and range of foods they eat, and another for ‘impulsive’ eating disorders, which includes vomiting after eating, self-harming, drug and alcohol abuse and ‘sexual disinhibition’.

‘There are differences in the personalities of the two types,’ says Chris. ‘The restrictive anorexic is desperate for control. She will usually be highly disciplined and rigidly organised. Her illness will probably have affected her whole life – she won’t have many social contacts, won’t go out much, and may be tormented by rituals surrounding eating or not eating. For instance, she may allow herself to eat just once a day, at six o’clock, and her food must be cut into four equal parts. If something happens, so she misses that six o’clock set time, she won’t eat at all.

‘The impulsive is the opposite – she is always out of control. She’ll be late for everything. Showing up 10 minutes late for an appointment, she might turn around and go home because “there’s no point”. She’ll appear to agree with her treatment, but change her mind the next day. But superficially, she often seems better than the restrictive anorexic. She often has friends and a good job. The impulsive may need a broader range of therapies to treat all her behaviours, but the anorexic will be harder to reach and engage.’

At the start, many if not most patients are in denial about their illness and will resist treatments. Water loading is common – filling up on fluids until they almost burst just before being weighed. They will try putting batteries or other weights inside their underwear or hair bands. At meals, they spread butter over their arms and through their hair when they think no one is watching. They might eat, but then leave the windows open in their rooms and sleep without a duvet, because they know that the colder you are the more calories your body burns to keep warm.

As well as a programme of eating and not indulging in behaviours, the patient attends at least several of the different therapies. In occupational therapy she learns to think and behave differently. Laura Lock heads the occupational therapy programme. ‘We teach them life skills, which fall into four main groups. The first is food management, which relates to buying, preparing and serving food, and can be the most traumatic experience. Next is social performance, where we help them learn how to communicate – literally how to introduce themselves to somebody and then have a conversation. How to disagree, how to negotiate. Then there’s occupational skills. Multiple phobias are common, so we help them to do things like use a bus or a train. And finally we teach personal skills, like coping with stress and anxiety, assertiveness and anger management. How to say no verbally rather than through food.’

All eating disorders arise because the patient has been unable to express their emotions in any other way. Art therapy is valuable for these patients early in the programme, when they still haven’t learnt to speak about their feelings. ‘Anorexia is like an anaesthetic,’ explains Chris. ‘It blocks access to the emotions. Once they begin to gain a little bit of weight, the emotions come back, and that’s when a crisis is likely to occur.’

Individual psychotherapy, group discussion groups with other patients and family therapy help to contain the emotions in a safe place, where they can finally be taken out, looked at and faced. ‘That’s why they say that recovery is worse than the illness. It is .’ Drama therapy is often helpful for impulsive patients. Many of the girls have a background of physical abuse and sexual trauma, and others have been physically and emotionally neglected or abandoned. Massage can be a safe form of physical contact and nurture. Nutritionists help to develop knowledge of food and build a new relationship to it. Social workers are assigned in cases where the patient is return ing to a difficult home or family situation. Every piece of the treatment jigsaw is vital. It’s why so many other treatments, which only offer some of these options, are doomed not to succeed, even when the therapists are skilled and committed.

Most of the patients develop eating disorders at a young age. ‘When they come in, they could be 20,’ explains Chris. ‘The first thing I might ask them is how old they really feel, because they feel as old as they were when the disorder started. That’s when they stopped. The treatment is designed to bring them up to their real age, but it’s very compressed. They might be going through four or five years’ worth of developing in six months. It’s terrifying, and unbelievably hard.’

It’s so hard that even at St George’s there are patients they can’t reach. ‘A lot of us are on a mission,’ admits Chris. ‘We become committed to a very great degree. We have to fight not to feel a sense of failure if we can’t help someone.’ That brings problems of its own. Carers can develop a hero complex, wanting to be the one to reach the girl nobody else can reach. They may cancel holidays, come into work when they’re sick. ‘It’s crucial to have your own boundaries, proper supervision and complete honesty in the team.’

The team relies heavily on each other. At the ward round, I hear the therapists describing their personal feelings about the patients. ‘I have a real soft spot for this girl,’ one therapist admits about one patient, ‘so you may have to take my views with that in mind.’ ‘And sometimes you really dislike a patient,’ says Chris. ‘They can be frustrating, manipulative, and play one member of the team off against another. It’s not a problem if everyone is open and honest with other members of the team.’

I also hear the therapists arguing about interpreting the patients’ problems and responses during treatment. Everyone broadly signs up to the jigsaw model of causes, but they disagree about the extent of different pieces. As a family therapist, Chris places a lot of emphasis on the family background. ‘There’s always a family problem of some kind with anorexics. I’ve never seen a case where there wasn’t. Not always deliberate abuse or neglect, although that’s common. But a parent may have been ill, and the girl has been forced to take care of herself and the rest of the family. Or the parents have a bad marriage and the child becomes the go-between and the emotional support for the mother.’

But Professor Lacey doesn’t reserve his compassion for the girls: ‘There are many factors involved. A lot of the pathology in the families has been caused by the eating disorder itself. By the time we see these girls, they have been ill for some time, and come in weighing 4st. Imagine what that has done to them all.’ When the patient leaves – usually after several months as an inpatient – her treatment continues as an outpatient for several years, gradually decreasing in intensity. It would be good to report that all patients and their families had access to the kind of staff and treatments available at St George’s, but the girls who pass through here are the exception, not the norm.

Getting help for eating disorders is often traumatic and tortuous. Parents wonder how much of their daughter’s strange behaviour can be attributed to the normal Sturm und Drang of adolescence. By the time it becomes plain that they have a serious problem on their hands, family relationships are strained, and the girl will resist any attempt to change her behaviour. The usual first step towards getting help is the family GP, but eating disorders need specialist help, preferably as early as possible. Most GPs are not equipped to deal with the level of secrecy and denial that are the trademarks of an established anorexic. Patients tell stories about being weighed fully clothed – and a pair of Dr Marten boots can weigh two pounds. Months can be lost while the family and GP try different diet sheets or antidepressants.

The specialist inpatient units such as St George’s typically get girls at more than 40 per cent below their normal body weight, many months or years into their disorder, when they are desperately sick and the family is in a state of despair. Getting the wrong help – too flaky, too authoritarian – is always a risk, and exacerbates the problem.

Gemma’s mother took her weekly to her GP to be weighed and to discuss her problems – all of which she denied, even when she developed bulimia and could be plainly heard vomiting a dozen times a day at home. Eventually, she was admitted to hospital. As there were no specialist units in her area, she was placed in the general psychiatric ward of the local hospital – a common practice.

‘They didn’t know what they were dealing with. Some of the nurses hated me, because they felt I was just doing it for attention. I needed 24-hour supervision and proper feeding, but I didn’t get it. They would threaten me with food – “If you don’t eat this, you’ll have to eat twice as much tomorrow” – they made it the enemy. The other patients could be very frightening. There were schizophrenics, manic depressives, people with all kinds of personality disorders. Patients would talk about my bed being the very bed where another patient had killed themself. Everybody was self-harming. They would take staples from a magazine and try to slash themselves with those. One boy sat talking and laughing with me in the kitchen then suddenly screamed and attacked me.’

After three months she went home, where she relapsed. She was admitted to Dr Dawson’s clinic, Rhodes Farm. ‘The atmosphere was totally different. I could tell straightaway that I wouldn’t be able to get away with anything. Everyone knew about eating disorders, and all the tricks. There was this unspoken attitude: “We understand everything, and you will do as we say to get you better.” It was tough, but it was also a huge relief.’

Unlike with the hospital, Gemma felt safe. ‘It was a bit like a boarding school. I let myself be looked after, and it was like being a carefree kid again. Everything was taken care of. We were supervised all the time.’ Her family and friends had tried everything from sympathy to threats, but here ‘at last, were people who really understood what I was going through. I didn’t feel like a freak any more. There was a lot of self-help and support from being with the other girls. That’s what made the difference.’

According to Dr Dawson, ‘The families usually feel wretched and guilty because they haven’t been able to help, but it’s not their fault. The girls need someone they can’t manipulate or emotionally blackmail or frighten.’ That means specialist care. ‘Even nurses on general wards can be scared of anorexics, and hostile to them because they don’t understand them.’ Alliance is very important with adult patients, she agrees, ‘but with children I take charge. The girls know at once that I mean business. I am not going to wait around for them to decide that they’re ready to eat.’ A combination of personality, culture and peer pressure ensures that almost all patients comply. If they don’t, there’s always the threat of tube feeding. ‘The threat is enough. I’ve only actually had to use it once in the past year.’

Gemma stayed at Rhodes Farm for several months, and went back to 9st. ‘You’re fed a precise amount of calories to make sure you gain at least 2lb a week. There was therapy, too, but that didn’t really work for me. I found talking to the other girls more useful. And we kept each other in check. You can’t leave the table until everyone is finished. You can’t not eat or keep everyone sitting there without becoming very unpopular. So you eat.’

When she left she maintained the Rhodes Farm regime of measuring foods precisely for many years. ‘I’d weigh an apple. Eat it, then weigh the core, so I’d get the precise weight and calories of what I’d just eaten. You get a lot better, but wiping out all traces takes years – if you ever manage it.’ Now in her final year at college, ‘about 3lb over my target weight’ and happy, she believes that her own eating disorder ‘was just something genetic in my personality’ and that she may remain vulnerable to relapses for the rest of her life. ‘I don’t think I’ll ever get really bad again, but I’m aware that I panic if I’ve been eating a lot, like at Christmas. I have to be on guard.’

Rosemary’s treatment and recovery was a slower process. At 5st, she was referred to a psychiatrist by her GP, but had to wait six months for an appointment. When she saw him, she was referred again, to an adolescent psychiatric unit with another long waiting list. ‘By then, I was beyond reach.’ After nine months of treatment she had gained only 10lb. ‘All the anorexics in the unit colluded with each other. One would stand guard while another exercised frantically. I learnt more tricks about avoiding eating there than I could ever have discovered on my own.’

A pattern of release, relapse and readmission followed. ‘I had managed to get through my A-levels with two As and two Bs, and I went to university. I enjoyed it and gained a bit of weight.’ Back home, the weight fell off again. She was referred to a different hospital with an eating-disorders programme. ‘It was horrible re-feeding with 3,500 calories a day. But I met a therapist there who I really liked. She was the first person I really connected with. I saw her for the next four years. It took me the first two years just to learn to talk, and to put what I was feeling into words. I’d never done that before. She saved me.’

She recovered enough to edit an excellent book of first-person accounts of eating disorders, Anorexics on Anorexia , edited by Rosemary Shelley (£13.95, Jessica Kingsley). ‘I hadn’t realised that other people could feel like I did. If I’d been able to read their stories earlier it would have helped me, which is why I produced the book – to help other people.’

Today, she lives alone, takes antidepressants and is still underweight. But she is working part time, and feels positive. ‘Food is fine now, though it’s taking me a very long time to gain weight.’ Her regret is not getting specialist help earlier. ‘I feel very strongly that GPs need to be much more aware and well informed about eating disorders. Mine just told me to go for a walk in the garden to cheer myself up.’

We may be slowly learning how to treat eating disorders, but we still don’t know how to prevent them, or why they are so predominant in girls, or why food is the chosen method for controlling or telegraphing their distress. Boys come from similarly disturbed backgrounds, and have similar problems with self-esteem and relating, but are far more likely to turn to drink, drugs or suicide. The context of culture and the social role of girls is an inescapable factor.

Anorexia became recognised as a medical condition in the late 19th century – although self-starvation has a long history which can be traced back to the saints and seers of the early churches. The fact that almost all sufferers of this ‘new’ condition were young women, at a time when the role of women was one of stifling domestic constraint, developed the idea that anorexia was a silent protest – the desperate attempt of the powerless to attain power. It remained rare until the 60s and 70s, when diagnosis and public awareness proliferated. Feminists recast eating disorders as a reaction to the injustices and double standards of patriarchy: the inequality of women, the denial of female desires and the objectification of the female body. At the same time, the ideal female shape became thinner, less curvy and more childlike, and mass ‘dieting’, which had been relatively sporadic up until then, became a universal mania.

Now eating disorders are a plague. In this era of ladettes, female dominance in education and apparent girl power, girls are still, like their repressed Victorian counterparts, confused, frustrated, manipulated and dominated, and terrified of having to grow up and become what society deems women ‘ought’ to be. And they are still having to protest silently, in the most horrible, wretched and destructive way, about what they aren’t allowed to express.