How mental distress can cause physical pain

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anxiety, Depression, depressive symptoms, diagnosis, distress, emotional distress, emotions, gastrointestinal issues, mental health issues, nausea, numbness, palpitations, panic, panic attacks, physical aches, physical pain, physical symptoms, psychological symptoms, stomach pains, stress

How mental distress can cause physical pain

It took Gemma* years to realise why she vomiting three of four times a week. She wasn’t suffering from some mysterious stomach illness. Instead, it was her mental health deteriorating.

“I have generalised anxiety disorder and panic disorder. I actually had physical symptoms first, long before I even knew what panic attacks or anxiety were,” the 24-year-old student based in London tells The Independent. “I suffer particularly badly from gastrointestinal issues. I spent years throwing up three or four times a week, ending up in hospital, with no real discernible ‘physical’ cause. The cause was anxiety, expressed physically.”

Gemma believes that her condition went undiagnosed for so long because of how mental and physical conditions are too often treated as mutually exclusive, when they are in fact inextricably linked.

“I think people very much misunderstand the link between physical and mental health,” she goes on. “I was one of those people. I didn’t even realise they could be connected when I was a teenager. I thought I was relaxed. Anxiety was the last thing I thought I was suffering from. But I was ignoring a lot of stress and was poor at acknowledging my own emotions. That stress had to come out somewhere, and I almost feel like it was my body trying to get me to listen.”

Now, Gemma knows that anxiety can cause her severe stomach pains. Or that panic attacks are what most often fill her stomach with nausea, cause her arms and legs to go numb, and her heart to palpitate.

Similarly, Courtney*, a 25-year-old publicist based in London, says her depression causes her to feel lethargic and sluggish and her bones and joints stiff and achy.

“The bigger problem with physical symptoms is for the anxiety side of things. Outside of panic attacks, a bad flare up of anxiety gives me absolutely stunning headaches with blurred or double vision, which often makes it hard to work – especially at a computer screen,” she tellsThe Independent.

And as the stigma of suffering from mental illness is talked about more widely, these comparatively nuanced aspects of understanding health are what need to be tackled next, say experts.

“The idea that mental illness is ‘all in your head’ is not only outdated, but can make us blind to the physical symptoms that can be a sign of mental health problems,” Rethink Mental Illness spokeswoman Nia Charpentier tells The Independent.

“For example, if you have anxiety, you may experience a fast heart rate and sweating; or for someone living with Post Traumatic Stress Disorder, the flashbacks can cause aches and pains, or make you feel sick. Similarly, depression can affect your appetite, causing you to either lose or gain weight.

Eating disorders such as bulimia and anorexia are perhaps the most obvious ways that serious mental illness can affect a person’s physical health.

“In the case of eating disorders, these illnesses may well involve physical symptoms that can become increasingly obvious over time, depending on the specific illness. However, it’s very important to remember that these are mental illnesses at their root, and changes to behaviour and mood will probably be noticeable long before any physical signs,” a spokesperson for the eating disorder charity B-Eat stresses. “It’s vital that people are aware of these psychological symptoms as well as the physical ones, as the sooner someone enters treatment for an eating disorder, the better their chance of recovery.”

It is erasing this confusing that spurs the Mental Health Foundation on to campaign for health check to include mental health screenings.

“Men in their forties are routinely screened for their blood pressure and cholesterol levels, when they are more at risk of ending their life by suicide,” points out Dr Antonis Kousoulis at the Mental Health Foundation, adding: “It’s crucial that health screening cover the health of our minds as well as the health of our bodies.”

*Name has been changed

What does depression feel like? Trust me – you really don’t want to know

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Depression, emotions, experience, support, symptoms

What does depression feel like? Trust me – you really don’t want to know

This is Depression Awareness Week, so it must be hoped that during this seven-day period more people will become more aware of a condition that a minority experience, and which most others grasp only remotely – confusing it with more familiar feelings, such as unhappiness or misery.

This perception is to some extent shared by the medical community, which can’t quite make its mind up whether depression is a physical “illness”, rooted in neurochemistry, or a negative habit of thought that can be addressed by talking or behavioural therapies.

I’m not concerned about which of these two models is the more accurate. I’m still not sure myself. My primary task here is to try to explain something that remains so little understood as an experience – despite the endless books and articles on the subject. Because if the outsider cannot really conceptualise serious depression, the 97.5% who do not suffer from it will be unable to really sympathise, address it or take it seriously.

From the outside it may look like malingering, bad temper and ugly behaviour – and who can empathise with such unattractive traits? Depression is actually much more complex, nuanced and dark than unhappiness – more like an implosion of self. In a serious state of depression, you become a sort of half-living ghost. To give an idea of how distressing this is, I can only say that the trauma of losing my mother when I was 31 – to suicide, sadly – was considerably less than what I had endured during the years prior to her death, when I was suffering from depression myself (I had recovered by the time of her death).

So how is this misleadingly named curse different from recognisable grief? For a start, it can produce symptoms similar to Alzheimer’s – forgetfulness, confusion and disorientation. Making even the smallest decisions can be agonising. It can affect not just the mind but also the body – I start to stumble when I walk, or become unable to walk in a straight line. I am more clumsy and accident-prone. In depression you become, in your head, two-dimensional – like a drawing rather than a living, breathing creature. You cannot conjure your actual personality, which you can remember only vaguely, in a theoretical sense. You live in, or close to, a state of perpetual fear, although you are not sure what it is you are afraid of. The writer William Styron called it a “brainstorm”, which is much more accurate than “unhappiness”.

There is a heavy, leaden feeling in your chest, rather as when someone you love dearly has died; but no one has – except, perhaps, you. You feel acutely alone. It is commonly described as being like viewing the world through a sheet of plate glass; it would be more accurate to say a sheet of thick, semi-opaque ice.

Thus your personality – the normal, accustomed “you” – has changed. But crucially, although near-apocalyptic from the inside, this transformation is barely perceptible to the observer – except for, perhaps, a certain withdrawnness, or increased anger and irritability. Viewed from the outside – the wall of skin and the windows of eyes – everything remains familiar. Inside, there is a dark storm. Sometimes you may have the overwhelming desire to stand in the street and scream at the top of your voice, for no particular reason (the writer Andrew Solomon described it as “like wanting to vomit but not having a mouth”).

Other negative emotions – self-pity, guilt, apathy, pessimism, narcissism – make it a deeply unattractive illness to be around, one that requires unusual levels of understanding and tolerance from family and friends. For all its horrors, it is not naturally evocative of sympathy. Apart from being mistaken for someone who might be a miserable, loveless killjoy, one also has to face the fact that one might be a bit, well, crazy – one of the people who can’t be trusted to be reliable parents, partners, or even employees. So to the list of predictable torments, shame can be added.

There is a paradox here. You want the illness acknowledged but you also want to deny it, because it has a bad reputation. When I am well, which is most of the time, I am (I think) jocular, empathetic, curious, well-adjusted, open and friendly. Many very personable entertainers and “creatives” likewise suffer depression, although in fact the only group of artists who actually suffer it disproportionately are – you guessed it – writers.

There are positive things about depression, I suppose. It has helped give me a career (without suffering depression I would never have examined my life closely enough to become a writer). And above all, depression, in nearly all cases, sooner or later lifts, and you become “normal” again. Not that anyone but you will necessarily notice.

But on the whole it’s a horror, and it’s real, and it deserves sympathy and help. However, in the world we live in, that remains easier to say than do. We don’t understand depression partly because it’s hard to imagine – but also, perhaps, because we don’t want to understand it.

I have a suspicion that society, in its heart of hearts, despises depressives because it knows they have a point: the recognition that life is finite and sad and frightening – as well as those more sanctioned outlooks, joyful and exciting and complex and satisfying. There is a secret feeling most people enjoy that everything, at a fundamental level, is basically OK. Depressives suffer the withdrawal of that feeling, and it is frightening not only to experience but to witness.

Admittedly, severely depressed people can connect only tenuously with reality, but repeated studies have shown that mild to moderate depressives have a more realistic take on life than most “normal” people, a phenomenon known as “depressive realism”. As Neel Burton, author of The Meaning of Madness, put it, this is “the healthy suspicion that modern life has no meaning and that modern society is absurd and alienating”. In a goal-driven, work-oriented culture, this is deeply threatening.

This viewpoint can have a paralysing grip on depressives, sometimes to a psychotic extent – but perhaps it haunts everyone. And therefore the bulk of the unafflicted population may never really understand depression. Not only because they (understandably) lack the imagination, and (unforgivably) fail to trust in the experience of the sufferer – but because, when push comes to shove, they don’t want to understand. It’s just too … well, depressing.

Self-harm is not just attention-seeking: it’s time to talk openly about the issue

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attention-seeking, Bullying, causes, emotional distress, emotional pain, emotions, isolation, obsessions, pain, physical pain, professional help, relief, secret, self-harm, stress, teenagers, young people

Self-harm is not just attention-seeking: it’s time to talk openly about the issue

Three years ago, with her parents and sisters out for dinner, then-13-year-old Lucy found herself alone in her family’s Lincolnshire home. Dressed in her pink Tinker Bell pyjamas, she began to make herself a cup of tea. Then she spotted an object on the kitchen counter that immediately diverted her attention. “Shall I do it?” Lucy asked herself. “Will it stop the pain?”

For Lucy, now 17, that evening marked the start of a two-and-a-half year struggle with self-harm. Two weeks before, she had been brutally attacked and raped (which she now describes as “the incident”). At the time, anxious they wouldn’t believe her, Lucy never fully revealed to anyone what had happened. In her mind, she tried to repress the rape. She began shutting herself in her bedroom. She told her parents she was feeling unwell. Physical pain, she decided, was the only way to purge her pent-up emotional pain.

“When you keep all your problems in, it feels like you’re screaming inside,” Lucy says. “But when you cut or burn yourself, the pain is more physical. You feel like you’re releasing that scream. After a few months, self-harming became part of my daily routine.”

Eventually, both at school or at home, Lucy was self-harming four times a day. She wore black jeans, black tops and even black gloves to conceal her scars. “I pushed everyone everyone away” Lucy says. “I stopped caring about school. My grades suffered. Self-harm became a real obsession. It took over my life.”

Today, having made a huge effort to stop, Lucy has not self-harmed for more than six months. But self-harm is still on the rise among the UK’s young population. Data published last year by a collaborate study from England Health Behaviour in School Aged Children (HBSC) revealed that up to one in five 15-year-olds across the country self-harm. During the past decade, according to the same study, there has been a three-fold increase in the total number of UK teenagers self-harming.

What drives young people to self-harm? Therapist Jenna Mutlick, who has a personal experience of it, says it is usually some form of “self-punishment”. People believe they have done something wrong – even when they haven’t – and then feel they deserve the pain. “I know a few people who self-harm because they are bullied and eventually come to believe that they then deserve to be bullied,” she says. “When you self-harm, it is so hard to escape from the [mental] space that you are in.”

“It’s a very heterogeneous group of people who self-harm, and there are a variety of reasons why people might start,” says Professor Glyn Lewis, head of psychiatry at University College London. “Clearly, there are people who self-harm because they want to take their own lives, but there are also people who want to self-harm because they are in difficult situations or want to relieve stress.

“As a long-term strategy, of course, self-harm is not very effective,” he adds, “but people do report that they get some form of relief from upsetting thoughts or emotions. Some forms of self-harm are obviously very dangerous, but there’s a continuum. Some people may only scratch themselves very superficially, for example, which won’t do any long-lasting damage.”

The causes of self-harm are likely to be complex, even if the person harming does not see the issues in that way. Kieran, from Glasgow, began self-harming after five years of “constant” physical and verbal bullying at school. His parents split up when he was seven, though he says it was the bullying – which still torments him today – that incited his self-harming. “The bullying made me feel really unbalanced,” says Kieran, now 23. “I started to self-harm when I was aged 11, and it kind of just snowballed from there. I stopped eating. I isolated myself from a lot of my friends and family. I kept it a secret for almost a decade.”

Like Lucy, Kieran says that self-harming became a secret obsession. The bullying made him feel “physically and mentally numb”. Self-harm, by contrast, made Kieran feel more alive, and he would regularly self-harm in his bedroom at night. “It brought me out of my slumber,” he says. “It made me feel normal, and I became addicted to doing it for that reason.” He says that the self-harm was like an “adrenaline shot” that brings everything back into focus.”

Kieran admits that he still has a “daily battle” with self-harm. He is significantly better than he was a few years ago, though, when he would harm himself up to 400 times in one evening. “It’s a high level of emotional distress that causes people to resort to self-harming,” he says. “People sometimes feel like they can’t cope with their emotion. It’s how they cope with life’s daily stresses.”

Chris Leaman, from the UK mental health charity YoungMinds, says it is still very much a taboo subject in British society. “Every year, we work with Childline, YouthNet and selfharmUK to try and combat these sort of stigmas for Self-Harm Awareness Day,” he says. “There is a definite problem around young men not feeling like they can talk about their issues, which can make self-harm quite a common issue among them.”

“Some people do talk about self-harm quite openly, but that’s relatively unusual,” says Professor Glyn Lewis. “A lot of people conceal self-harming behaviour from their friends and family. There are not necessarily signs to look out for; it’s more a case of often asking people how they are feeling, and keeping communication open with them. As a rule, families and friends concerned about someone self-harming always should talk to the person themselves and encourage them to seek professional help.”

Statistically, teenage girls are still more than twice as likely to self-harm than young males, and this has helped create another gender-based stigma: that self-harming girls are simply seeking attention. Fiona Brooks, professor of adolescent and child health at the University of Hertfordshire, who led the investigations for last year’s HBSC report, identifies this as a prevalent problem. “Nowadays, young people are in a much more uncertain world than before,” she says. “Instead of self-harming just being dismissed as attention seeking, it’s something that needs to be taken seriously. Equally, if young girls are self-harming for attention, that’s a different matter that needs to be taken just as seriously.”

Lucy thinks back on that evening she started self-harming, and wishes that she could tell herself to stop – and talk to someone. Talking, like with most former self-harmers, has been a significant part of Lucy’s recovery, but she also credits her own determination as a decisive factor. “If you don’t want to stop, you won’t,” she says. “In the end, a lot of it comes down to how you see yourself. I used to feel people were always judging me, but now I feel I don’t care what they think. Why should I let them control my happiness?”

The narcolepsy family’s house of sleep

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asleep, awakefulness, cataplexy, diagnosis, dreams, emotions, family, laughter, narcolepsy, sleep disorder, sleep paralysis, symptoms, treatment

The narcolepsy family’s house of sleep

Fixing appointments with the López family can be tricky. “Come round at midday,” says David López, when I speak to him on the telephone. “If you are lucky we will all be awake.”

They are not. David’s brother Miguel Angel, aged 36, has to be roused from the prone position. Their father Julián is here, as is their cousin Nuria, who keeps house, and admits that she is also finding it hard to stay awake. “This place is getting to be like a hospital ward,” says David as he squeezes his considerable bulk into a chair in their spacious but drab sitting room.

The family’s long, narrow Madrid apartment is a tunnel of doziness. Even at midday only a dribble of daylight enters, adding to the sensation of semi-wakefulness. Our conversation is accompanied by a symphony of yawning, eye-rubbing, occasional drifts into semi-slumber and sudden jolts upright as David, Miguel Angel and Julián snap back – or simply panic that they may have missed something. They do not want to seem impolite.

This gloomy apartment, on a street off Madrid’s small red-light district, is a house of sleep. It is a place of yawning, snoozing and snoring, of eye-rolling, swooning bouts of momentary cataplexy and of wildly vivid, violent dreams. It is also a laboratory for the future where the mysteries of narcolepsy and cataplexy, the twin demons of hundreds of thousands of people, may be revealed.

The López clan is the first-known example of an extended family of sufferers in the world. Rosa Peraita-Adrados, the Madrid doctor whose dogged detective work tracked down the disconnected branches of a unique family that was fractured by Spain’s bloody civil war, believes they could help to find a cure for one of the most puzzling of conditions. Their genes have already provided some of the strongest clues yet about what might be causing this strange and incapacitating sleep disorder.

Doctors once thought of narcolepsy and cataplexy as separate illnesses. The former provokes irresistible bouts of sleep; the latter is a momentary muscular collapse provoked by sudden emotions or laughter. Now it is clear the two things usually go together. David admits to often nodding off halfway through a task. He is so afraid of dropping dishes that he hugs them closely to his chest and walks very slowly to the dinner table. “It is just the fear,” his brother says. “I sometimes want to point this out, or make a joke or something, but that might be worse.” Laughter, he points out, is one of their worst enemies, as it provokes bouts of cataplexy.

Narcolepsy and cataplexy were both first described in the 1880s – and even then the first case of the latter, discovered by German doctor Carl Westphal, was a family problem, shared by a mother and son. About one in 5,000 people are thought to suffer from a condition whose prevalence varies across the globe, with some 12,000 in Britain alone.

Living with the illness can be tough. Sufferers struggle to stay either awake or asleep for a sustained period of time. Luckily for me, the Lópezes are enjoying our chat. “The worst thing is boredom,” explains David, who is 30 and, like his brother, is out of work. “If I am doing something I really like, or a project I am working at, then I can keep going for hours. The blood reaches your brain and keeps you going. But the moment you relax, the blood doesn’t get there and off you go.”

“Often you don’t realise yourself what is happening,” explains Miguel Angel. “Someone says: ‘Hey, you are falling asleep.’ And you say: ‘No. No I am not.’ But you are.” “And then,” adds their father, “it is goodbye and you are out.”

Miguel Angel says that he has to tell any new friends about his condition immediately. “But if you want a girlfriend then you have to find someone who is not only going to listen to you but can also understand what you are talking about.” One symptom, the violent dream, is a relationship-wrecker; Miguel Angel’s are terrifyingly vivid. “I’ve seen him hurl the bedside table across the room,” says David. “Or he is asleep shouting ‘Fire! Fire!'” Once, Miguel Angel grabbed his girlfriend – now ex – by the throat in the middle of the night. “I was upset with her about something and, rather than have it out with an argument, I took it to bed with me,” he says. “It must have been frightening.”

David, meanwhile, suffers persecution dreams. “Above all what you feel is fear, panic and sometimes you even experience your own death. It is like starring in your own horror film.” Julián’s cousin Jesús – another of Peraita-Adrados’s patients – battles with everything from monsters to gypsy gangs, thrashing his limbs around in action-packed fights. But not all the dreaming in the house is bad. Sometimes euphoria strikes instead. “I have found my father chuckling loudly to himself in his sleep,” says David. “Sometimes I too have woken up laughing myself silly. It all depends on your mood.”

Dreams are so lifelike that they play tricks on the memory and sensations of déjà vu – associated with extreme tiredness in non-narcoleptics – are common and intense. “You are convinced you have lived it before,” says David. “In fact, you don’t know what is real and what is not.” Reality can be further scrambled by short episodes of microsleeps and automatic behaviour, when sufferers continue doing routine tasks even though they have actually fallen asleep for a few seconds. “I can walk along the street asleep,” explains Julián. “You hear what is going on, but can’t see because your eyes are closed. It lasts a few seconds and suddenly, bang! You wake up. Perhaps someone touches you, or your head starts falling and you wake up to recover your balance.”

David and Miguel ANGEL’S mother knew she was marrying into a sleepy family. In the working-class Madrid barrio of Lavapiés, their great-aunt Teodora was known as la dormida – the sleeping one. On the other side of Madrid, Julián’s twin brother, Andrés, recalls other members of the family who were famous for their doziness. “Our own mother, Rosa, could walk down the street asleep,” he says. “I don’t know how she avoided being run over.”

Their grandfather Domingo had similar symptoms. Like many narcoleptics, however, Rosa and Teodora worked around their illness, keeping down jobs as cleaners. Andrés, now aged 63, has also held down jobs most of his life – though Peraita-Adrados thinks the night shifts he worked at one stage may have been the trigger for the symptoms of his illness to appear.

Teodora’s daughter Josefina, another sufferer who Peraita-Adrados tracked down in the modest Madrid barrio of Entrevias, says her mother and aunts developed their own mechanisms for controlling the disease. “My mother would fall deeply asleep on the bus or the metro, but somehow always woke up just before her stop,” she recalls. Teodora, Rosa and their sister Patro were known together as las bellas durmientes– the sleeping beauties – and, in their later years, the latter two could often be spotted snoozing together in the sunshine on a bench outside the barrio’s church. “We would all be eating together and suddenly both would be sitting there dozing. I remember Aunt Patro falling into her food,” Andrés tells me. “Yes,” says his cousin Jesús. “Patro was the real number!”

“Our mother was always on the lookout for the illness in us when we were children,” says Miguel Angel. But symptoms often do not appear, or become striking, until the late teens or early adulthood. The brothers first noticed theirs in their mid-20s, though David recalls suffering an intense version of a common schoolchild’s problem – staying awake in class. “I swear I slept through half of them,” he said.

Peraita-Adrados first became aware of the family history when Andrés was referred to the sleep disorder and epilepsy unit she runs at Madrid’sGregorio Marañón University Hospital. “The first time I saw Andrés,” she says, “he told me he had a twin brother, Julián, who had been diagnosed in another hospital. And Julián’s children had also been diagnosed, but no one had put them all together. That was when I realised this might be interesting. There had been very little studying of families, so I got into contact with Professor Mehdi Tafti at the Centre for Integrative Genomics at the University of Lausanne, and said, ‘This is important, why don’t we study it?'”

It took Peraita-Adrados years of trawling through records at various Madrid hospitals to trace the members of the clan and find their clinical histories. Different branches of the family went their own ways during the Spanish civil war in the 1930s, after they emerged from that conflict – like much of the militantly left-wing working class in Lavapiés – on the losing side. Rosa and her husband were both jailed after General Franco’s right-wing nationalists took Madrid in 1939 and rounded up many of those who had defended the city or joined the communist, socialist or anarchist groups that had helped run the Spanish capital over the previous three years. The twins and their four other children were distributed around the family and spent periods of their childhood apart. Their father was a candidate for the firing squad, but ended up with a long prison sentence; Rosa got out of jail earlier and later had children with another man. Death and prison fractured the clan, leaving a plethora of half-siblings and a split Spanish family. “It is true there are a lot of us, but we hardly ever see them. Not aunties or cousins or anyone,” explains David. “Not that I’ve ever felt the need. It has just always been like that.”

Now a family tree starting with great-grandfather Domingo covers 48 people over four generations, with 14 members of the third and fourth generations showing symptoms of narcolepsy-catoplexy. Fewer than 10% of narcolepsy-cataplexy sufferers have relatives with the illness, and only 1 or 2% share it with more than one other person in their family. Certainly no family as extended as this has been available to study before, offering a unique opportunity to reveal some of the genetic secrets of the disease.

“There is evidence that the origin of the illness is autoimmune in the 95% cases which do not have an obvious genetic cause,” explains Peraita-Adrados. Sufferers seem to produce antibodies that attack the hypocretin neurons, stopping or slowing production. Doctors can now extract spinal fluid and test for hypocretin to make a diagnosis. “If the levels are very low, or zero, you know that this individual will eventually have cataplexy,” she explains. The few cases with a genetic origin that have been tested so far, like the López family, also show no hypocretin. “We found Andrés and Julían, the twins, had zero.”

The discovery of the hypocretin deficiency a decade ago was key to understanding the mechanism behind the symptoms. Produced in the brain’s hypothalamus, hypocretin (also known as orexin) plays an important role in a person’s alertness. It also affects feelings of fullness, which explains why narcoleptics often develop strange eating patterns and may become obese.

Now the tests on the López clan provide clues about what may be going wrong at a genetic level. The most important discovery is a mutation on a gene known as MOG, which is shared by all sufferers in the family, but none who do not have the illness. This gene codes for a protein called myelin oligodendrocyte glycoprotein, which plays a key role in maintaining the central nervous system via an insulating material called myelin. The MOG gene has been linked to everything from schizophrenia and bipolar disorder to multiple sclerosis. Researchers are understandably excited by the discovery of a mutation in a family of people suffering narcolepsy with cataplexy. The task now is to try to find a link between myelin in the central nervous system and hypocretin deficiency. “What we are trying to do is complete the chain of the mechanism to work out how this mutation, which provokes a change in the myelin, connects to the part that we know about the symptoms and their mechanisms,” says Peraita-Adrados.

Cataplexy generally, but not always, appears several years after the symptoms of narcolepsy are clear. It comes on suddenly, usually caused by a sudden surge of emotion. Sufferers lose muscle tone from their head downwards – jaw or neck muscles slacken, eyes begin to roll and finally legs start feeling weak and may buckle. “It starts with my mouth being blocked, and then I see that I am beginning to lose strength. I can’t walk. Either I stay still or I sit down,” explains Andrés, who was a first division football linesman and still holds down a weekend job as a referee. “It is as if I had gone out drinking and got totally plastered. Once it happened to me in the Puerta del Sol square and I remember people looking at me as if I was a stumbling drunk.”

Jokes, his cousin Jesús explains, are another problem. Laughter, excitement, intense sadness or strong emotions of almost any kind can set him off. “Your neck feels weak and then your head just tips over.” Even watching soccer matches can be tricky. “I can’t celebrate Real Madrid’s goals,” he says. “Everyone else is jumping up and down and shouting, but I try to limit myself to just clenching my fists in celebration. If I screamed, I’d just fall over.” Miguel Angel asks friends not to rag him. “They don’t always remember. The other day we were helping a friend shift boxes of fire extinguishers and everyone started mucking around and having a laugh. Suddenly the cataplexy came on, so I had to stop.”

Another common symptom is sleep paralysis, when they wake up, but cannot move or speak for up to two minutes. “Obviously your breathing muscles don’t seize up, but the rest of your musculature is completely paralysed,” explains Peraita-Adrados. “It produces huge anxiety.”

Treatment is currently restricted to lifestyle changes or trying to block sleep and cataplexy attacks. “You don’t cure the illness, you fight the symptoms,” says Peraita-Adrados. American patients get amphetamines, while European doctors prescribe other stimulants. The new generation of Prozac-style anti-depressants help control cataplexy, though no one is sure why. Sodium oxybate, used in Europe for anaesthesia in the 1960s, is the only drug that improves nocturnal sleep and daytime symptoms. German investigators have begun to produce hypocretin – a key peptide that narcoleptics lack – and this holds out one hope for a cure, but it is still early days.

In another sleepy apartment on the other side of Madrid, Josefina struggles to get through stories about her children and grandchildren. The love she feels, and the waves of emotion her stories provoke, send her into brief bouts of cataplexy. Her 32-year-old son, also called David – who first noticed the symptoms while serving a drugs-related jail sentence – suffers from them, too. “If I get angry or argue with someone then my legs start to go,” he says. “The last time was three days ago when I got angry with a guy on the bus and started telling him off.”

Standing by Josefina’s front door, as we say goodbye, we talk about pet dogs. “Mine died just three days ago, in David’s arms,” she says. The thought brings on a wave of sadness. Josefina’s eyes roll over, her head tilts forward and she grabs for the doorframe, crumpling against it. Her cataplexy, explains Peraita-Adrados, is among the most severe – occasionally laying her out on the ground. Accidents happen. “I’ve burned myself a couple of times with cooking oil,” Josefina admits. “I’ve seen her fall when she was doing the ironing, even when eating watermelon,” says David.

Many sufferers manage to lead almost normal lives, holding down jobs, pursuing hobbies and raising children. Medicines, siestas and knowing their own limitations all help. The former head of the Spanish patient’s association, for example, regularly drives 300 miles from Alicante to Madrid on his motorbike. Learning to repress emotions is one of the worst side-effects of the illness, says Peraita-Adrados. “Adults can have terrible lives. I’ve seen failed marriages and lots of people with problems at work. I had one patient who was a long-haul truck driver, doing journeys from Madrid to Amsterdam and, of course, he had an accident. He suffered with head injuries, but fortunately his life was saved.” One member of the López clan had been a taxi driver.

“But the worst thing is the children,” she says. “We are now seeing symptoms appear at a fairly early stage. These kids fall asleep in class and get called dozy-heads. They are fat, so they can’t play. And then cataplexy starts to appear. They have to learn to control their emotions. They realise that when they are watching cartoons, for example, they can fall into cataplexy – and they just don’t understand what is happening. I have a lovely little patient – the youngest I have ever seen – a girl called Natalia who is just six years old. She is an adorable, beautiful child. I asked her to draw me her dreams, so she did a lovely little drawing of her going over a bridge, but there was a monster there. I asked: ‘And what is that?’ And she said: ‘Well, if I laugh I could fall and then the monster could come and attack me.’ Her mother says she laughs less and less.”

The genetic study may come too late to help the generation of Julián, Andrés and Josefina – but sufferers like Natalia will benefit if their extended family helps fill in the gaps in the chain of cause and effect. “If by studying us they can get close to finding a cure, then that would be fantastic,” says Miguel Angel. “It would be great,” agrees David. Their father does not join the chorus. He looks as if he is about to doze off on the sofa.

Not just a boy thing: how doctors are letting down girls with autism

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aggression, anxiety, Depression, Eating Disorders, emotions, gender, mental health issues, misdiagnosis, OCD, relationships, social exclusion, stress, tics, vulnerability

Not just a boy thing: how doctors are letting down girls with autism

Annette Lewns has more experience than most of the different ways in which boys and girls with autism are treated. Her 14-year-old son, Ryan, was diagnosed when he was three and a half. But doctors refused to diagnose her 12-year-old daughter, Rachel, until she was nine.

“What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated,” said Lewns. “But Rachel’s autism was hidden unless you knew where to look for it.

“Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn’t really have to look too hard to see she didn’t genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV.”

“The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy.”

While Ryan’s condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. “Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not,” said Lewns.

Estimates of the ratio of females to males diagnosed with Asperger’s syndrome or high-functioning autism varies from 1:4 to 1:10. No one understands this gender disparity: whether women really are less likely to be on the spectrum than men – or whether doctors are failing to spot the disorder in women.

Opinions are divided: Richard Mills, director of research at the National Autistic Society (NAS) says he “would not be surprised” if the true ratio was twice as high, with one woman on the spectrum for every two men. Dr Judith Gould, director of the NAS’s Lorna Wing Centre, thinks the ratio could be even narrower, with 1:1.5 female:male.

We may soon have an answer. Mills is leading the UK arm of a two-year international programme, Autism in Pink, which will look at the condition in women, focusing on the stress, social exclusion, vulnerability and misdiagnosis they suffer.

It follows concerns about reluctance to diagnose women. One recent survey by NAS found girls may wait longer than boys for a diagnosis and are more likely to be misdiagnosed: just one-fifth of girls with Asperger’s syndrome who responded to the survey were diagnosed by the age of 11, compared with half of boys.

The UK is leading the research side of the programme. Last week, Mills signed up the first two of the 12 women with Asperger’s he needs to work with researchers over a two-year period.

“I hope the programme will be the first step to ending the current trend for gender to be a barrier to diagnosis and post-diagnostic support,” he said. “Because research in the past has largely concentrated on males, the way we understand autism tends to be very much based on the experiences of men and boys with the condition. People are reluctant, for some reason, to make a diagnosis in girls and women.”

This reluctance is exacerbated by the fact that girls and women with Asperger’s or high-functioning autism can be more adaptive than boys: they are commonly better at hiding things or seeming more sociable, masking what doctors traditionally think of as the signs of autism.

But the strain of trying to appear “normal” can be immensely stressful. Gould said it results in “many of the girls we see having developed secondary problems such as anxiety, eating disorders or depression”.

This can also mean that misdiagnosis of girls and women is also a problem. The survey found 42% of females had been wrongly told they suffered psychiatric, personality or eating disorders, compared with 30% of males.

There is also the problem that the gender difference becomes a self-fulfilling prophecy: because more males are diagnosed than females, it is their symptoms and behaviours that experts have studied. The so-called screening tools, developed to help diagnosticians spot the syndrome, focus on culturally “male” interests, such as computers, trains and cars, rather than things more likely to appeal to a girl, such as animals, soap operas or fashion. Gould is rewriting the NAS’s diagnostic interview for social and communication disorders to include “gender-neutral” cues.

Even when an accurate assessment is given, however, it is no guarantee that the necessary support and help will materialise: the NAS survey found women continue to struggle after diagnosis, with half of females with Asperger’s or high-functioning autism – compared with 39% of males – saying it made no difference to the support they received.

Lucy Clapham, 25, spent years being turned away by doctors who insisted “girls don’t get autism” and told her to simply “act normal and read female magazines”. “I am certain that my diagnosis was delayed because of the fact that I am a girl,” she said. “My mum first noticed something when I was about six but our GP laughed at the suggestion. I’ve gone to counsellors, doctors and psychiatrists but all of them, including my teachers, refused to see I had classic autism even though I had casebook symptoms: almost no speech until I was five, no friends, hours spent staring at the washing machine, lining toys up and flicking my fingers in front of my eyes.”

When she was 12, Clapham became violent, aggressive and developed multiple tics, obsessions and compulsions. “I stopped talking outside of the house and sunk into an inner world,” she said.

After two more years and about eight counsellors, Clapham’s GP referred her to a child psychiatrist. “She was adamant that girls didn’t get autism, they just had ‘traits’,” said Clapham. “She claimed that I just needed to ‘act normal’ and that by buying nice clothes and reading women’s magazines I could learn to be ‘normal’. The only diagnosis I received from her was depression and anxiety.”

After leaving the children’s mental health service “none the wiser and possibly with more mental health problems than when I had arrived”, Clapham was sent to the adult mental health service and, after a long battle, to the Maudsley hospital in London, where she was finally diagnosed with autism, Tourette syndrome and obsessive-compulsive disorder.

“I was still refused services, however, partly because there were none available and partly because our local authority was not willing to fund an out-of-town, specialist autism service,” said Clapham. “I ended up getting sent to a college for the blind where I developed more mental health problems and became very aggressive because no one understood me or my autistic behaviour.

“When I was 20, I ended up in care because my mother couldn’t cope with my aggression and anxiety.”

Clapham stayed there for three years but still struggles. “Despite my diagnoses, some people still seem to believe that autism is a ‘boy thing’,” she said.

There is no clear understanding about how many girls and women are being missed – or wrongly diagnosed – and for how long. But that may soon change: the first neuroimaging analysis of women and men, with and without ASD, has been under way for the past two and a half years at King’s College’s Institute of Psychiatry (IoP) and the Autism Research Centre at the University of Cambridge. It’s hoped this research could provide the clues. The final stage of the project is about to begin, with results expected in months.

“It’s very exciting,” said Dr Michael Craig, a senior lecturer and honorary consultant at the IoP’s department of forensic and neurodevelopmental sciences. “We could well be looking at gender-specific treatments for Asperger’s being developed in quite a short period of time.”

What is autism?

First identified in the 1940s, autism is a developmental disability that lasts a lifetime and affects someone’s interaction with other people – how they communicate with and relate to them. It is a spectrum condition, affecting some more seriously than others. While some lead fairly independent lives, others suffer serious learning disabilities and need extensive support. Many who have an autism spectrum disorder can be badly affected because they have trouble processing sounds, sights and smells.

Around half a million people in the UK have autism, according to the National Autistic Society (NAS). What causes it is still unclear. “There is strong evidence to suggest that autism can be caused by a variety of physical factors, all of which affect brain development. It is not due to emotional deprivation or the way a person has been brought up,” the NAS says. Genetic factors are assumed to be responsible, and scientists are trying to pin down which genes are involved. Genetic testing to enable earlier diagnosis is therefore still a long way off.

Many people are not diagnosed until they reach adulthood. A recent NAS study of more than 8,000 people with autism, parents and carers found 52% were initially misdiagnosed. One in three adults with the condition say they have developed serious mental health problems because they have not received enough support to help them cope with the difficulties autism brings.

Eating Disorders: Body Language

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'impulsive' eating, 'restrictive' eating, anorexia, binge eating, boundaries, calories, compulsive eating, conflict, control, coping mechanism, development, Eating Disorders, emotional difficulties, emotions, family, food, GPs, hospitalisation, meal plans, medical treatment, psychotherapy, recovery, relapse, responsibility, safe, Self-esteem, support, symptoms, team, therapists, Therapy, treatment, vomiting

2001:

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.