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a1000shadesofhurt

a1000shadesofhurt

Tag Archives: recovery

Why should teachers talk about mental health with students and colleagues?

07 Wednesday Jan 2015

Posted by a1000shadesofhurt in Uncategorized

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anxiety, Bullying, career, colleagues, Depression, harassment, management, mental health issues, recovery, secret, stigma, stress, support, teachers

Why should teachers talk about mental health with students and colleagues?

Clare can now talk with calm reflection about the moment she decided to end her life. She remembers feeling as if she were living in a sort of twilight zone where nothing made sense: she was being shunned by colleagues and faced losing her job as a teacher.

Things had spiralled out of control after Clare was signed off work with stress-related depression. When invited back to school to talk about when she might return, managers tried to renegotiate her contract. Clare immediately sought legal advice. “I felt isolated, bullied and harassed.

“My managers were asking other staff members about me and I was becoming increasingly anxious by what was happening. Instead of supporting me and making reasonable adjustments to the fact that I was off with stress, the school’s response was completely punitive.”

Part of the problem is that mental illness in teaching is stigmatised, says Clare. “If you reveal that you are stressed, it is seen as a great weakness – that you are just not up to the job.”

Figures published by the Association of Teachers and Lecturers (ATL) this year showed that more than a third of school and college staff have noticed a rise in mental health issues among colleagues in the past two years. Despite this, 68% kept their problems a secret from their bosses.

In a recent Teacher Support Network survey, the majority of teachers (89%) blamed excessive workloads for their mental health problems, and 40% wouldn’t talk to anyone at work about mental illness because was seen as “a sign of weakness”.

People worry about being seen as not good enough, says Tim, a teacher who retired early due to stress and anxiety. “If you are suffering from work-related stress you are especially reluctant to seek the support of senior management for fear that your complaints could be seen as an indictment of their management.”

David Ambler, ATL district secretary in Birmingham, says mental health problems are also stigmatised because of worries about how this will make a school look. “To reduce the stigmatisation of mental illness requires more than simply a change of attitude among headteachers and senior management in school. It requires a change of attitude among the general public and parents to understand that teaching is a stressful job and sometimes teachers go under or need treatment.”

When Michael was signed off with stress-related depression, he found that some colleagues were understanding but others were not. Teachers worry about the impact of admitting to a mental health problem on their career, he says. The headteacher who employed Michael in his current post said that she was taking a huge risk and put him on a six-month trial period. “Employers are not as sure about mental illness as they would be about physical illness,” he says. “If I broke my leg, for example, and came back to work I don’t think I would be trialled in the same way.”

But this needn’t be the case if the stigma around the issue of mental illness is tackled and the right support is put in place. Rachel, who has experienced depression for years but hasn’t taken time off work, puts her ability to keep teaching without taking any extensive leave down to the support of her senior leadership team and colleagues.

“I am able to talk to all my senior management team and have good friends on the staff who also know and are supportive. My experience of mental health, if anything, has done the opposite of holding me back. But if I had not received the understanding and support I did then I would almost certainly have ended up off sick and probably left teaching.”

Nor is this just an issue of doing the right thing and supporting people experiencing mental health problems – it’s also essential to their recovery. Alison Stark, a senior teacher at a Dutch secondary school, who is off sick with work-related burnout, says there is a more open culture to mental health in the Netherlands.

“The first step is admitting that you have a problem. I talked about my problems with a friend and just being able to say out loud that I am struggling helped me accept things,” she says.

Her school has been patient and supportive – rather than worrying about what to say, colleagues have sent her cards, flowers and message of support. “It is important that schools have a supportive management who are understanding. Headteachers need to support management and create an atmosphere in which teachers can talk about it [mental illness].”

For Stark, the most supportive person has been her deputy head, who has sought solutions by asking her what she needs and what would aid her recovery. “They say, ‘do you want me to allow you home access to email or not? Should I block it and protect you?’”

An openness about mental illness could also help students by ensuring they have positive role models. Kelly, who just started in a girls’ school, is recovering from an eating disorder and used to self-harm. She says stress from teaching can cause a flare-up in food-control behaviours and she has visible scars on her arm. “I am what you could call a normal weight so it’s not obvious I struggled with bulimia, anorexia and excessive exercising,” she says.

Kelly wants to share her experiences to show her pupils that no one should let mental health problems define them, but she worries about the repercussions. “I worry that my school would not be supportive of my talking about my experiences as they would be concerned about the potential backlash from parents. If students mis-reported the story at home some parents may be concerned about my capacity to cope.”

• Most of the names in this article have been changed to protect the teachers who shared their stories.

The Tackling mental health stigma in schools series is funded by Time to Change. All content is editorially independent except for pieces labelled advertisement feature. Find out more here.

Schizophrenia: the most misunderstood mental illness?

16 Wednesday Jul 2014

Posted by a1000shadesofhurt in Uncategorized

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diagnosis, discrimination, fear, help, media, mental health issues, paranoia, psychosis, recovery, schizophrenia, shame, silence, stereotypes, stigma

Schizophrenia: the most misunderstood mental illness?

Let’s face it, when most people think about schizophrenia, those thoughts don’t tend to be overly positive. That’s not just a hunch. When my charity, Rethink Mental Illness, Googled the phrase ‘schizophrenics should…’ when researching a potential campaign, we were so distressed by the results, we decided to drop the idea completely. I won’t go into details, but what we found confirmed our worst suspicions.

Schizophrenia affects over 220,000 people in England and is possibly the most stigmatised and misunderstood of all mental illnesses. While mental health stigma is decreasing overall, thanks in large part to the Time to Change anti stigma campaign which we run with Mind, people with schizophrenia are still feared and demonised.

Over 60 per cent of people with mental health problems say the stigma and discrimination they face is so bad, that it’s worse than the symptoms of the illness itself. Stigma ruins lives. It means people end up suffering alone, afraid to tell friends, family and colleagues about what they’re going through. This silence encourages feelings of shame and can ultimately deter people from getting help.

Someone who knows first hand how damaging this stigma can be is 33 year-old Erica Camus*, who was sacked from her job as a university lecturer, after her bosses found out about her schizophrenia diagnosis, which she’d kept hidden from them.

Erica was completely stunned. “It was an awful feeling. The dean said that if I’d been open about my illness at the start, I’d have still got the job. But I don’t believe him. To me, it was blatant discrimination.”

She says that since then, she’s become even more cautious about being open. “I’ve discussed it with lots of people who’re in a similar position, but I still don’t know what the best way is. My strategy now is to avoid telling people unless it’s comes up, although it can be very hard to keep under wraps.”

Dr Joseph Hayes, Clinical fellow in Psychiatry at UCL says negative perceptions of schizophrenia can have a direct impact on patients. “Some people definitely do internalise the shame associated with it. For someone already suffering from paranoia, to feel that people around you perceive you as strange or dangerous can compound things.

“I think part of the problem is that most people who have never experienced psychosis, find it hard to imagine what it’s like. Most of us can relate to depression and anxiety, but a lot of us struggle to empathise with people affected by schizophrenia.”

Another problem is that when schizophrenia is mentioned in the media or portrayed on screen, it’s almost always linked to violence. We see press headlines about ‘schizo’ murderers and fictional characters in film or on TV are often no better. Too often, characters with mental illness are the sinister baddies waiting in the shadows, they’re the ones you’re supposed to be frightened of, not empathise with. This is particularly worrying in light of research by Time to Change, which found that people develop their understanding of mental illness from films, more than any other type of media.

These skewed representations of mental illness have created a false association between schizophrenia and violence in the public imagination. In reality, violence is not a symptom of the illness and those affected are much more likely to be the victim of a crime than the perpetrator.

We never hear from the silent majority, who are quietly getting on with their lives and pose no threat to anyone. We also never hear about people who are able to manage their symptoms and live normal and happy lives.

That’s why working on the Finding Mike campaign, in which mental health campaigner Jonny Benjamin set up a nationwide search to find the stranger who talked him out of taking his own life on Waterloo bridge, was such an incredible experience. Jonny, who has schizophrenia, wanted to thank the man who had saved him and tell him how much his life had changed for the better since that day.

The search captured the public imagination in a way we never could have predicted. Soon #Findmike was trending all over the world and Jonny was making headlines. For me, the best thing about it was seeing a media story about someone with schizophrenia that wasn’t linked to violence and contained a message of hope and recovery. Jonny is living proof that things can get better, no matter how bleak they may seem. This is all too rare.

As the campaign grew bigger by the day, I accompanied Jonny on an endless trail of media interviews. What I found most fascinating about this process was how so many of the journalists and presenters we met, were visibly shocked that this young, handsome, articulate and all-round lovely man in front of them, could possibly have schizophrenia.

Several told Jonny that he ‘didn’t look like a schizophrenic’. One admitted that his mental image of someone with schizophrenia was ‘a man running about with an axe’. It was especially worrying to hear this from journalists, the very people who help shape public understanding of mental illness.

Many of the journalists also suggested that through the campaign, Jonny has become a kind of ‘poster boy’ for schizophrenia and in a way, I think he has.

Jonny has mixed feelings about the label. “I hope that by going public with my story, I’ve got the message out there that it is possible to live with schizophrenia and manage it. It’s not easy, it’s an ongoing battle, but it is possible. But I’m aware that I’m one of the lucky ones. I’ve been given access to the tools I need like CBT, but that’s not most people’s experience. Because of our underfunded mental health system, most people don’t get that kind of support. I can’t possibly represent everyone affected, but I hope I’ve challenged some stereotypes.”

As Jonny rightly says, one person cannot possibly represent such a diverse group of people. Schizophrenia is a very broad diagnosis and each individual experience of the illness is unique. Some people will have one or two episodes and go on make a full recovery, while others will live with the illness for the rest of their lives. Some people are able to work and be independent and others will need a lot of support. Some people reject the diagnosis altogether.

What we really need is a much more varied and nuanced depiction of mental illness in the media that reflects the true diversity of people’s experiences.

What I hope Jonny has managed to do is start a new conversation about schizophrenia. I hope he has made people think twice about their preconceptions of ‘schizophrenics’. And most importantly, I hope he has helped pave the way for many more ‘poster boys’ and girls to have their voices heard too.

For more information, visit Rethink Mental Illness

*Name has been changed

 

Malnutrition in conflict: the psychological cause

10 Tuesday Jun 2014

Posted by a1000shadesofhurt in PTSD

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Children, conflict, despair, displaced, flashback, hopelessness, hypervigilant, infanticide, irritability, isolation, malnutrition, natural disasters, parents, post-traumatic stress, psychological support, recovery, signs, suicide, trauma, violence

Malnutrition in conflict: the psychological cause

Treating malnutrition in humanitarian crises, such as conflict and natural disaster, is far more complex than simply curing disease and providing children with therapeutic foods. Often, post-traumatic stress disorder – common in extreme situations – hinders treatment and its success. In Bangui, in the Central African Republic (CAR), the number of children suffering from life-threatening malnutrition has tripled since the outbreak of violence in December 2013.

Each month, 180 patients are being seen in a ward that initially had just 49 beds available for malnourished children. For many weeks, two to three patients – and their caregivers – were sharing single beds, increasing the risk of cross-infection of illness and delaying recovery.

The cause of severe acute malnutrition runs far beyond economic hardship and lack of food. Many of the hundreds of thousands of people displaced by fighting have been directly exposed to death threats, witnessed the deaths of neighbours or family members, and lost nearly all of their belongings. They are often exhausted by the harsh living conditions in camps.

75% of over 1,000 case studies of the parents of malnourished children collected by Action Against Hunger between July 2013 and March 2014 presented symptoms of post-traumatic stress linked to their exposure to extreme violence. The stress prompted behavioural changes, flashbacks, fatigue, isolation, excessive irritability, and feelings of hopelessness and despair.

These experiences also provoked reactions that – while understandable, normal, and usually temporary – can be disabling enough to impact a mother’s ability to nurse and feed her child. Nurses leading pre- and post-natal sessions with women in the 12 health centres around Bangui have reported that some mothers become convinced they cannot produce milk, or fail to respond to their child’s needs, resulting in early weaning that can be fatal for babies in an already challenging environment. In extreme cases, some mothers have attempted suicide and infanticide.

Children, while too young to fully understand what they have witnessed, may develop physical symptoms such as continuous crying, refusing to eat and bed wetting. Even small babies can present signs of trauma, such as feeding and sleep disturbances, continuous crying, and poor interaction. Not recognising the signs, some parents don’t make the connection and severely scold their children. To combat this, malnourished children and their carers are receiving psychological and social support.

At the nutritional therapeutic ward of Bangui’s main pediatric hospital, Action Against Hunger’s nutritional, psychological and social teams offer free treatment for severely malnourished children from a specialised counselling team. Feeding times, medical monitoring and psychological and motor activities pace the daily routine.

When Dieumerci Tsongbele, a single parent to his six-year-old daughter Jessica, arrived at the hospital, she had been refusing food and was not interacting with others. When he joined a welcoming session led by psychological and social experts, Tsongbele and other parents learned about factors that exacerbate malnutrition, including trauma. The information evoked an emotional response from the father, who had witnessed people killed. While he managed to escape the violence, the experience had left him unable to sleep, irritable and hypervigilant. Overwhelmed by the situation, he admitted he had been less attentive to his daughter’s needs.

During the programme, Tsongbele and the other parents participated in various activities with their children ranging from toy making to baby massage, which aim to provide both parents and children with a safe space to recreate natural and vital bonds that are essential for human development. Play sessions help to limit the negative effects of malnutrition strengthen parent-child relationships. Malnutrition treatment is not simply about filling stomachs, but also restoring the desire to eat.

Names have been changed to protect identities.

Stephanie Duvergé is a Action Against Hunger psychologist in the Central African Republic. Follow @ACF_UK on Twitter.

A group of neuroscientists believes it can communicate with “locked-in” coma patients

21 Monday Apr 2014

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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'vegetative state'; 'trapped'; coma, awakefulness, awareness, Brain activity, brain imaging, brain injury, brain scans, cognitive processing, communication, conscious, diagnosis, families, fMRI, Locked-In Syndrome, misdiagnosis, powerlessness, recovery, reflex, relatives

A group of neuroscientists believes it can communicate with “locked-in” coma patients

“Imagine you wake up, locked inside a box,” says Adrian Owen.”It’s a perfect fit, down to every last one of your fingers and toes. It’s a strange box because you can listen to absolutely everything going on around you, yet your voice cannot be heard. In fact, the box fits so tightly around your face and lips that you can’t speak, or make a noise. At first, this feels like a game. Then reality sets in. You see and hear your family lamenting your fate. You’re too cold. Then too hot. You’re always thirsty. The visits of your friends and family dwindle. Your partner moves on. And there’s nothing you can do about it.”

Owen and I are talking on Skype. I’m sitting in London while he’s at the University of Western Ontario in Canada. Owen’s reddish hair and close-cropped beard loom large on my screen as he becomes animated describing the torment of those with no voice: his patients.

People in a “vegetative state” are awake yet unaware. Their eyes can open and sometimes wander. They can smile, grasp another’s hand, cry, groan or grunt. But they are indifferent to a hand clap, unable to see or understand speech. Their motions are not purposeful but reflexive. Their minds remain firmly shut. Still, when their eyelids flutter open, you are always left wondering if there’s a glimmer of consciousness.

A decade ago, the answer would have been a bleak and emphatic no. Not any longer. Using brain scanners, Owen has found that some may be trapped inside their bodies yet able to think and feel to varying extents. The number of these cases has soared in recent decades, ironically, because doctors have steadily become better at saving patients with catastrophic injuries.

Today, trapped, damaged and diminished minds inhabit clinics and nursing homes worldwide – in Europe alone, the number of new coma cases is estimated to be 230,000 annually, of whom 30,000 will languish in a persistent vegetative state. They are some of the most tragic and expensive artefacts of modern intensive care.

Owen knows this only too well. In 1997, a close friend set off on her usual cycle to work. Anne had a weak spot on a blood vessel in her head, known as a brain aneurysm. Five minutes into her trip, the aneurysm burst and she crashed into a tree. She never regained consciousness.

The tragedy of Anne’s accident would shape Owen’s life. He began to wonder if there was a way to determine which of these patients were in an unconscious coma, which were conscious and which were somewhere in between?

That year, he had moved to the Medical Research Council’s Cognition and Brain Sciences Unit in Cambridge, where researchers used various scanning techniques. One, positron emission tomography (PET), highlights different metabolic processes in the brain, such as oxygen and sugar use. Another, known as functional magnetic resonance imaging (fMRI), can reveal active centres in the brain by detecting the tiny surges in blood flow that take place as a mind whirrs. Owen wondered whether he could use these technologies to reach out to patients, like his friend, stuck between sensibility and oblivion.

Today, being alive is no longer linked to having a beating heart, explains Owen. If you are on a life-support machine, are you dead? Is a failure to sustain independent life a reasonable definition of death? No, otherwise we would all be “dead” in the nine months before birth.

The issue becomes murkier when we consider those trapped in the twilight worlds between normal life and death – from those who slip in and out of awareness, who are trapped in a “minimally conscious state”, to those who are severely impaired in a vegetative state or a coma.

In the wake of the development of the artificial respirator during the 1950s in Denmark, pioneering work to categorise disorders of consciousness was carried out in the 1960s by the neurologist Fred Plum in New York and the neurosurgeon Bryan Jennett in Glasgow.

Plum coined the term “locked-in syndrome”, in which a patient is aware and awake but cannot move or talk. With Plum, Jennett devised the Glasgow Coma Scale to rate the depth of coma, and Jennett followed up with the Glasgow Outcome Scale to weigh up the extent of recovery, from death to mild disability. Together they adopted the term “persistent vegetative state” for patients who, they wrote, “have periods of wakefulness when their eyes are open and move; their responsiveness is limited to primitive postural and reflex movements of the limbs, and they never speak”. In 2002, Jennett was among a group of neurologists who chose the phrase “minimally conscious” to describe those who are sometimes awake and partly aware, who show erratic signs of consciousness so that at one time they might be able to follow a simple instruction and at another they might not.

Kate Bainbridge, a 26-year-old schoolteacher, lapsed into a coma three days after she came down with a flu-like illness. A few weeks after her infection had cleared, Kate awoke from the coma but was diagnosed as being in a vegetative state. Luckily, the intensive-care doctor responsible for her, David Menon, was also a principal investigator at the newly opened Wolfson Brain Imaging Centre in Cambridge, where Adrian Owen then worked.

Menon wondered whether elements of cognitive processing might be retained in patients in a vegetative state, and discussed with Owen how to use a brain scanner to detect them. In 1997, four months after she had been diagnosed as vegetative, Kate became the first patient in such a state to be studied by the Cambridge group. The results, published in 1998, were extraordinary. Her brain responses were indistinguishable from those of healthy volunteers; her scans revealed brain activity at the back of her brain, in a part which helps recognise faces. Kate became the first such patient in whom sophisticated brain imaging (in this case PET) revealed “covert cognition”. Of course, whether that response was a reflex or a signal of consciousness was, at the time, a matter of debate.

The results were of huge significance not only for science but also for Kate and her parents. “The existence of preserved cognitive processing removed the nihilism that pervaded the management of such patients in general, and supported a decision to continue to treat Kate aggressively,” recalls Menon.

Kate eventually surfaced from her ordeal, six months after the initial diagnosis. She described how she was indeed sometimes aware of herself and her surroundings. “They said I could not feel pain,” she says. “They were so wrong.”

Sometimes she’d cry out, but nurses thought it was nothing more than a reflex. Hospital staff had no idea how much she suffered in their care. Physiotherapy nurses never explained what they were doing to her. She was terrified when they removed mucus from her lungs. “I can’t tell you how frightening it was, especially suction through the mouth,” she has written. Her pain and despair became such that she tried to snuff out her life by holding her breath. “I could not stop my nose from breathing, so it did not work. My body did not seem to want to die.”

Kate says her recovery was not so much like turning on a light but a gradual awakening. By then she had lost her job, her sense of smell and taste, and much of what might have been a normal future. Now back with her parents, Kate is still very disabled and needs a wheelchair. Yet, 12 years after her illness, she started to talk again and, though still angry about the way she was treated when she was at her most vulnerable, she remains grateful to those who helped her mind to escape.

She sent Owen a note:

“Dear Adrian, please use my case to show people how important the scans are. I want more people to know about them. I am a big fan of them now. I was unresponsive and looked hopeless, but the scan showed people I was in there. It was like magic, it found me.” k

Nicholas Schiff is a neurologist at Weill Cornell Medical College in New York. His working life is a balancing act between putting the interests of his patients and their families first and keeping true to the science as he wrestles with disorders of consciousness. “There’s a lot we don’t know,” he admits. “Frankly, I am wrong a lot of the time.”

In 2005, Schiff applied his emerging understanding of the circuits of consciousness to Jim, a 38-year-old man who had been beaten and robbed and was left minimally conscious. Jim’s eyes had mostly remained shut. He was unable to speak and could communicate only by a nod, or tiny eye or finger movements. His plight seemed hopeless. Eventually, Jim’s mother gave a “do not resuscitate order” to doctors. Schiff thought differently.

Schiff had earlier scanned Jim with fMRI in 2001. His team had played subjects, including Jim, an audiotape in which a relative or loved one reminisced. In detailed fMRI scans, Jim had shown that, despite having a very underactive brain, he had preserved large-scale language networks. When he heard a story that meant something to him, his brain lit up. What, thought Schiff, if Jim’s thalamus could be activated by deep brain stimulation?

A brain pacemaker was implanted into Jim. After its two electrodes delivered pulses of electricity to his thalamus, he was able to use words and gestures, respond reliably to requests, eat normally, drink from a cup, and carry out simple tasks such as brushing his hair. Schiff believes that once a brain re-engages with the world, it accelerates processes of repair. For the next six years, before Jim died of unrelated causes, he kept his mind above the minimally conscious state. “He could converse in short sentences reliably and consistently and make his wishes known,” says Schiff. “He could chew and swallow and eat ice-cream and hang out. His family told us that they had him back.” The case made the front page of the New York Times. “I prayed for a miracle,” his mother told me at the time he was brought back. “The most important part is that he can say ‘Mummy and Pop, I love you.’ God bless those wonderful doctors. I still cry every time I see my son, but it is tears of joy.”

In a forested campus south of Liège, Steven Laureys studies vegetative patients in research that dates back decades. Working there as part of the Cyclotron Research Centre in the 1990s, he was surprised when PET brain scans revealed that the patients could respond to a mention of their own name. Meanwhile, on the other side of the Atlantic, Nicholas Schiff was finding that partially working regions lay within catastrophically injured brains. What did it all mean?

At that time, doctors thought they already knew the answers: no patient in a persistent vegetative state was conscious. Medical practitioners, with the best intentions, thought it was perfectly acceptable to end the life of a vegetative patient by starvation and the withdrawal of water. This was the age of what Laureys calls “therapeutic nihilism”.

What Owen, Laureys and Schiff were proposing was a rethink of some of the patients who were considered vegetative. A few of them could even be classed as being fully conscious and locked-in. The establishment was doggedly opposed. “The hostility we encountered [in the late 1990s] went well beyond simple scepticism,” says Schiff. Looking back, Laureys pauses and smiles thinly: “Medical doctors do not like to be told they are wrong.”

Then came 2006. Owen and Laureys were trying to find a reliable way to communicate with patients in a vegetative state, including Gillian. In July 2005, this 23-year-old had been crossing a road, chatting on her mobile phone. She was struck by two cars and diagnosed as vegetative.

Five months later, a strange piece of serendipity allowed Gillian to unlock her box. “I just had a hunch,” says Owen. “I asked a healthy control [subject] to imagine playing tennis. Then I asked her to imagine walking through the rooms of her house.” Imagining tennis activates part of the cortex called the supplementary motor area, involved in the mental simulation of movements. But imagining walking around the house activates the parahippocampal gyrus in the core of the brain, the posterior parietal lobe, and the lateral premotor cortex. So, if people were asked to imagine tennis for “yes” and walking around the house for “no”, they could answer questions via fMRI.

Gazing into Gillian’s “vegetative” brain with the brain scanner, he asked her to imagine the same things – and saw strikingly similar activation patterns to the healthy volunteers. It was an electric moment. Owen could read her mind.

Gillian’s case, published in the journal Science in 2006, made front-page headlines around the world. The result provoked wonder and, of course, disbelief. “Broadly speaking, I received two types of email from my peers,” says Owen. “‘This is amazing – well done!’ and ‘How could you possibly say this woman is conscious?'”

As the old saw goes, extraordinary claims require extraordinary evidence. The sceptics suggested that it was wrong to make these “radical inferences” when there could be a more straightforward interpretation. Daniel Greenberg, a psychologist at the University of California, Los Angeles, suggested that, “the brain activity was unconsciously triggered by the last word of the instructions, which always referred to the item to be imagined”.

Parashkev Nachev, a neurologist now at University College London, says he objected to Owen’s 2006 paper not on grounds of implausibility or a flawed statistical analysis but because of “errors of inference”. Although a conscious brain, when imagining tennis, triggers a certain pattern of activation, it does not necessarily mean the same pattern of activation signifies consciousness. The same brain area can be activated in many circumstances, Nachev says, with or without any conscious correlate. Moreover, he argues that Gillian was not offered a true choice to think about playing tennis. Just as a lack of response could be because of an inability to respond or a decision not to co- operate, a direct response to a simple instruction could be a conscious decision or a reflex.

What is needed is less philosophising and more data, says Owen. A follow-up study published in 2010 by Owen, Laureys and colleagues tested 54 patients with a clinical diagnosis of being in a vegetative state or a minimally conscious state; five responded in the same way as Gillian. Four were supposedly in a vegetative state at admission.

Owen, Schiff and Laureys have explored alternative explanations of what they observed and, for example, acknowledge that the brain areas they study when they interrogate patients can be activated in other ways. But the 2010 paper ruled out such automatic behaviours as an explanation, they say: the activations persist too long to signify anything other than intent. “You cannot communicate unconsciously – it is just not possible,” says Owen. “We have won that argument”.

Since Owen’s 2006 Science paper, studies in Belgium, the UK, the US and Canada suggest that a significant proportion of patients who were classified as vegetative in recent years have been misdiagnosed – Owen estimates perhaps as many as 20 per cent. Schiff, who weighs up the extent of misdiagnosis a different way, goes further. Based on recent studies, he says around 40 per cent of patients thought to be vegetative are, when examined more closely, partly aware. Among this group of supposedly vegetative patients are those who are revealed by scanners to be able to communicate and should be diagnosed as locked-in, if they are fully conscious, or minimally conscious, if their abilities wax and wane.

There is anecdotal evidence that when contact is re-established with the occupant of a living box they are understandably morose, even suicidal. They have been ground down by frustration at their powerlessness, over the months, even years, it can take to recognise their plight. Yet the human spirit is resilient, so much so that they can become accustomed to life in this twilight state. In a survey of patients with locked-in syndrome, Laureys has found that when a line of communication is set up, the majority become acclimatised to their situation, even content (again, these insights took time to be accepted by the medical and scientific establishment – and even to be published in a scientific journal – reflecting the prevailing unease about the implications for hospitals and care homes).

The important question is detecting the extent to which such patients are conscious. Studies of large numbers of patients with brain injuries, and how they fare over the years, show that it makes a huge difference to the chance of recovery if a patient is minimally conscious rather than vegetative. The former have fragmentary understanding and awareness and may recover enough to return to work within a year or two.

Yet there are still surprises, such as the case of New York fireman Don Herbert, who awoke after a decade from a minimally conscious state caused by a severe brain injury suffered while fighting a fire in 1995. Schiff has used a technique called diffusion tensor imaging to show how a brain can rewire itself even decades after an injury – yet in the past year, even he has recommended withdrawing care from a man who had lain in a coma for eight weeks after a cardiac arrest. “I was wrong,” he says. “This man is now back at work.”

Parashkev Nachev has not changed his view since he first criticised Owen’s work, and spelt out the basis of his unease in a more detailed paper published in 2010. “For every relative of a living PVS [persistent vegetative state] patient given (probably false) hope, another is burdened with the guilt of having acquiesced in the withdrawal of treatment from someone who – he has been led to believe – may have been more alive than it seemed,” he says. “There are moral costs to false positives as well as to false negatives.

“I find the whole media circus surrounding the issue rather distasteful. The relatives of these patients are distressed enough as it is.”

Laureys, Owen and Schiff spend a great deal of time with the families and understand these sensitivities only too well. Owen counters that, from his years of experience dealing with the families, they are grateful that doctors and scientists take an interest and are doing everything they can. “These patients have been short-changed over the years,” he insists.

Owen is adamant that doctors have a moral duty to provide a correct diagnosis, even if the results cause guilt, unease or distress. “We must give every patient the best chance of an accurate diagnosis, so we can give them the appropriate care that goes along with that diagnosis.”

Under the umbrella classification of “vegetative” lies a vast array of brain injuries and, as a result, even some of the most vocal critics accept that some vegetative patients are not as diminished as traditional measures suggest. Professor Lynne Turner-Stokes chairs a group for the Royal College of Physicians that is revising UK guidelines on “Prolonged Disorders of Consciousness”. She remains unconvinced that the exceptional cases identified by Owen, Laureys and Schiff are particularly common or that enough has been done to establish brain scanners as a standard tool for routine diagnosis, particularly when the cost and convenience of these methods are taken into account. When it comes to extending these tests to all patients in a vegetative states as standard practice, “The evidence is just not there yet,” she says.

But she stresses that she is simply being cautious, not sceptical, describing the work of Owen, Laureys and Schiff as “important and exciting”. “We are only just beginning to scratch the surface,” she says. “But I have no doubt [these techniques] will have a place, eventually, in the evaluation of patients.”

Back on Skype, Owen smiles, considering whether to tell me what he is planning next. His partner, Jessica Grahn, also a neuroscientist, became pregnant at the start of 2013. What happens when consciousness winks on in the developing brain? He emails me a video of their unborn child, a montage of fMRI slices through their baby’s head, as it twists and turns in Jessica’s womb. “My colleagues have been doing fMRI on my wife’s tummy every week for a few weeks now to see if we can activate the foetus’s brain,” he writes. “It is amazing.”

Some names have been changed to protect identities. Adrian Owen’s friend Anne remains in a vegetative state. Adrian Owen and Jessica Grahn’s baby boy was born on 9 October 2013.

Mind over cancer: can meditation aid recovery?

17 Monday Feb 2014

Posted by a1000shadesofhurt in Cancer

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anxiety, Cancer, Depression, meditation, mindfulness, present, recovery, well-being

Mind over cancer: can meditation aid recovery?

Cancer leaves many scars. For survivors, the wounds that run deepest are often those left on the mind. Fear, anxiety and depression are common during recovery. But instead of popping a pill, could practising a few minutes of mindfulness a day be as effective as any drug?

While Buddhists have been practising the meditation technique for more than 2,000 years, medical science is finally beginning to catch up, discovering the extent to which focusing the mind on the present moment can help treat a range of mental conditions associated with cancer recovery.

In the largest trial to date, published last year in the Journal of Clinical Oncology, breast cancer survivors who practised mindfulness were found to have increased calm and wellbeing, better sleep and less physical pain. Clinical trials by Oxford University have shown that mindfulness is as effective as antidepressants, and in patients with multiple episodes of depression can reduce the recurrence rate by 40-50% compared with usual care.

Andy Puddicombe’s 20 years of practice were put to the test when he was diagnosed with testicular cancer last April. While the mindfulness expert and former Tibetan Buddhist monk expected the physical pain after surgery to remove his right testicle, he was surprised by the emotional and mental impact of recovery.

“The biggest shock about recovery is that there is no end point,” he says. “People often talk about having beaten cancer, but I find that hard to relate to. I would say that nature has simply taken its course and I am very fortunate that it didn’t spread.”

Puddicombe, who aims to demystify meditation with his Headspace app, explains that mindfulness allows us to step back from our thoughts and feelings and view them with a different perspective. It would be very easy, he adds, to get caught up in negative thinking or feelings of anxiety and depression. But mindfulness gave him enough space to be able to embrace these emotions without getting lost in them.

“Rather than it being a terrible experience, it became a transformative one,” he reveals. “It may sound a bit fluffy, but the reality is anything but. In fact, it was life-changing.”

Psychotherapist Elana Rosenbaum has been practising and teaching mindfulness stress reduction techniques since the early 1980s. She believes her ability to focus the mind on the present moment and break patterns of negative thought helped her survive an aggressive form of non-Hodgkin’s lymphoma which required bone marrow transplant surgery to remove.

She explains that recovering from cancer was a frightening experience. Once she had finished her treatment, she felt lost without the help and support of medical staff. Mindfulness helped her to face those fears.

Rosenbaum, who helps others use mindfulness in cancer recovery at the University of Massachusetts medical school, says: “People think you are the same. They think you have gone back to what used to be normal. But you’re really different. It’s a new normal and you don’t know what that is. I have had several recurrences of the cancer and I live with uncertainty, but it’s not my focus. Mindfulness helps me to value this moment.”

Nice, the UK’s National Institute for Health and Clinical Excellence, approved a technique developed by Cambridge and Toronto Universities for the management of depression in 2004, which means the therapy is already available on the NHS.

Headspace’s chief medical officer, Dr David Cox, prescribes cancer recoverers a dose of 10 to 40 minutes mindfulness practice a day. But once you are proficient at that, you have to remember to be mindful in anything and everything you do as much as possible, whether that’s walking the dog or washing the dishes.

He believes the link between mind and body has been neglected for far too long and it is a breath of fresh air for many doctors that someone is finally asking the question. Cox says medical professionals have known about the benefits for a while and mindfulness offers a “glimmer of hope” for tackling the spiralling cost of healthcare on the NHS. Because sufferers of depression tend to be more apathetic about looking after themselves and taking medication, compliance with treatment is therefore worse.

One of the reasons that mindfulness is really catching on is that it can be delivered in a way that is entirely secular, stripped of any religious connotations, making it entirely acceptable to the wider population.

“Around 30 years ago, yoga was probably sniffed at a little bit and now it’s much more mainstream,” Cox adds. “To me, it’s the perfect storm for something that can really help a vast number of people. I hope in five years’ time it will have the same level of acceptance as brushing your teeth every day, eating your five a day and doing 30 minutes’ exercise.”

What health professionals should know about eating disorders

15 Friday Mar 2013

Posted by a1000shadesofhurt in Eating Disorders, Young People

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consequences, contact, counsellors, diagnosis, early intervention, Eating Disorders, family, friends, GPs, health professionals, health service, help, myths, nurses, psychiatrists, psychologists, recovery, sensitivity, social workers, support, symptoms, treatment, weight, young people

What health professionals should know about eating disorders

Over the course of two years, I have met with 40 young women and men who have shared on film honest details about their experiences of eating disorders. Their hope is that sharing their stories will help other people who are similarly affected to feel less alone and encourage them to seek help.

The research shows that common myths about the illness have prevented many young people from getting the treatment and support they needed, from family, friends and even the health service.

During the course of their eating disorder, young people came into contact with many different types of health professionals including GPs, nurses, counsellors, psychologists, psychiatrists, dieticians, social workers and other support workers.

There are some things that health professionals should know when dealing with a young person living with and recovering from an eating disorder.

Anyone can have an eating disorder

Anyone can become ill with an eating disorder. Eating disorders affect people of all ages, backgrounds, sexualities, both men and women. You can’t tell if a person has an eating disorder by just looking at them.

First point of contact is often critical

This first contact with services was often a huge step for a young person. People often found it very difficult to talk about what was going on, trying to hide their problems and it could take months, even years, to seek help. The way they were treated at this point could have a lasting, positive or negative, impact.

Young people hoped that the health professionals would realise just how hard asking for help was and to help nurture and support their confidence to stay in contact with services.

Early intervention is key

Young people often felt that people struggled to recognise the psychological symptoms of eating disorders as well as the range of different eating disorders.

If those who haven’t yet developed a full-blown eating disorder could be recognised, they can also be helped earlier. This is critical, as the longer eating disorders are left undiagnosed and untreated, the more serious and harder to treat they can become.

Effective, early intervention could be achieved when health practitioners were knowledgeable, well trained, sensitive and proactive.

Eating disorders are about emotions and behaviours, not just about weight

A common myth that many of the young people had come across was the thought that people with eating disorders were always very underweight. This idea had made it harder for some to get treatment and support or even to be taken seriously by their doctor.

In some cases, young people felt that the only way for them to be taken seriously and be able to access eating disorder services was to lose more weight. This could have serious consequences; the more weight they lost, the harder it was for them to be able to seek or accept help.

See the whole person, not just the eating disorder

Once in contact with health services, above all else, young people wanted not just to be seen “as an eating disorder” but to be treated as a whole person. It was important that they felt treated as individuals and for health professionals to realise that everyone responded differently.

A good health professional also tried to engage young people on other things than just the eating disorder, hobbies or interests.

Respect the young person

Feeling respected, listened to and being given the space to explain things from their perspective was important for young people during treatment and recovery.

Professionals should take their time and find out what was going on for that particular person, not act on assumptions. Health professionals shouldn’t patronise or dismiss issues that were important to the person in front of them.

This research, funded by Comic Relief, has now been published on online at Youthhealthtalk.org.

Ulla Räisänen is a senior researcher with the health experiences research group at University of Oxford, and was responsible for conducting the study published on Youthhealthtalk.org

Job applicants with schizophrenia facing ‘discrimination’

11 Monday Feb 2013

Posted by a1000shadesofhurt in Uncategorized

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carers, discrimination, employment, recovery, remission, schizophrenia, stigma, workplace

Job applicants with schizophrenia facing ‘discrimination’

Tens of thousands of people with schizophrenia are being denied the chance to work because of “severe discrimination”, a report has found.

Only eight per cent of people with schizophrenia are in paid employment, compared with 71 per cent of the general population, although many more would like a job, a report by the Work Foundation says.

Seven out of 10 people with schizophrenia feel that they experience discrimination because of their condition. The report blames a lack of understanding, stigma, fear and discrimination towards people with schizophrenia and calls for urgent government action to prioritise work as part of the recovery for those with mental illnesses.

People with schizophrenia in paid employment are over five times more likely to achieve remission from their condition than those who are unemployed or in unpaid employment, according to the report, Working with Schizophrenia.

Charles Walker, chairman of the all-party mental health group in the Commons, said: “For many people with the condition, having a job can mean a great deal, both economically and socially.

“We must ensure funding continues so that more people living with schizophrenia can access the workplace and carers can also return to work.”

Cancer patients left isolated

11 Monday Feb 2013

Posted by a1000shadesofhurt in Cancer

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Cancer, Depression, family, friends, isolation, recovery, support, treatment

Cancer patients left isolated

Almost a quarter of cancer patients lack support from family and friends during their treatment and recovery, a charity has found.

Patients told a survey that family and friends were “too busy” or lived too far away, a spokeswoman for Macmillan Cancer Support said.

The charity, which surveyed 1,700 patients, said isolation could have a “shattering impact” on people living with cancer. The poll found that 23 per cent felt isolated, a third experienced depression and many skipped meals and treatment because of a lack of support.

More: The Loneliness of Cancer Patients Is a Sad Indictment of Society

Waging war on web ‘thinspiration’

08 Friday Feb 2013

Posted by a1000shadesofhurt in Eating Disorders

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'thinspiration', anorexia, bulimia, Eating Disorders, recovery

Waging war on web ‘thinspiration’

Do a quick search on Instagram and you will find reams of “thinspiration” material, usually in the form of pictures that glamorises the extreme skinniness of various models and celebrities.

Hashtags such as #thynspo, #ana (for anorexia), #mia (for bulimia) and #blithe (code for self-harm) abound. From there you can find thousands of pictures of bloody wrists and thighs, messages of despair and cries for help, and photos of underweight women that mostly focus on apparent ribs, concave stomachs, thigh gaps, and prominent hip and collar bones.

Perhaps most distressing are the pro-anorexic quotes interspersed between pictures, such as “Do it for the thigh gap”, “Skip dinner, weigh up thinner,” “1 like = 10 squats,” “Do not reward yourself with food, you’re not a dog” and the most frequently posted shibboleth, Kate Moss’s infamous quote: “Nothing tastes as good as skinny feels.”

Community support for these self-destructive illnesses is not unlike the first wave of pro-ana virtual communities of the late 1990s, though the nature of an image-based social networking service means that random friendships occur more easily thanks to hashtags, and an emphasis on imagery that dangerously ratifies the erroneous assumption that only skinny women are beautiful. There, thinstagrammers photo-blog their daily frustrations and struggles, and comment on each other’s pictures to encourage fasting. Recovery accounts sometimes pop up too, usually gently advising people to get help.

When I first scrolled through those pictures, my kneejerk reaction was disgust. The idea that Instagram users are tagging photos that promote the obsession with thinness as a lifestyle, rather than a mental illness, infuriated me. I’ve never had an eating disorder, but I know that while illnesses such as anorexia nervosa are widely accepted as containing a genetic component, many studies have also indicated the impact of sociocultural factors (peer pressure, troubled relationships, sexual abuse and the ideal beauty type prevailing in western culture) that trigger people into becoming eating-disordered.

Instagram’s policing measures have been thus far unsuccessful. The company added a pop-up disclaimer for #ana and #mia with a link to theAmerican National Eating Disorders website and in April 2012 the company publicly banned #thin, #thinspiration and #thinspo, which prompted Thinstagrammers to spell new hashtags differently – for example #thynspo or #thinspoooo. As such, Instagram’s policies might come off as more a perfunctory PR gesture (and a cover-your-ass move) than a committed strategy to police graphic content, though admittedly the problem feels like an unstoppable plague.

I wanted to try something different. Upon finding a number of pro-recovery Instagram accounts tagged with words such as #edrecovery, I decided to make one myself (@lovethighself) in order to use pro-ana hashtags in an attempt to subvert and effectively spam pro-ana communities. I posted hundreds of quotes that promoted recovery and body acceptance, as well as attractive pictures of average and plus-sized models. I also photoshopped some of the common pro-ana images to refute their harmful messaging.

These attempts were not intended to be dismissive of a mental illness I do not have, nor to raise the ire of people with anorexia or bulimia, but rather to enable users looking up these hashtags to reconsider their scrolling habits. I figured that not everyone looking at thinspiration has an eating disorder. Some who do may be on the verge of relapse from recovery, while others who don’t (yet) might be slowly becoming obsessed with their weight and curious about thinspiration and dieting tips, putting themselves at risk.

“Thinspo” has overwhelmingly been proven to cause negative effects even in the non-eating-disordered. One study published by the European Eating Disorders Review found that college women without a history of eating disorders who looked at pro-ana websites reduced their calorie intake in the following weeks, half of them unconscious they were doing so. By posting a reactionary wave of images promoting body acceptance while negating the beliefs of ana advocates, I hoped to make a difference.

I soon received tons of comments thanking me and urging me to keep posting. “Please always keep this account. I’m going through an eating disorder and I’m fighting so hard but it pulls me down a lot and I just am still trying to overcome it. My screen saver is one of your pictures and it helps me so much,” wrote one follower. Many users who self-identified as having ana or mia in their bios began to follow me, and I started following some of them, too, providing support when I could. But sadly, because of the sheer mass of thinspiration pictures posted on Instagram every day, it’s been impossible for me to truly dent the thinstagram subculture.

The degree to which western society’s ideal body type has diminished our sense of self-worth is unmeasurable, but unmistakably and dangerously high. Young girls are crying out for help, using Instagram as an emotional outlet and banding together around a service to commiserate. It’s understandable that such communities form, given the isolating effects of eating disorders. But while they can be somewhat helpful in allowing the eating-disordered to have a voice, #ana and #mia are also likely to further fuel their disorders.

As it is, thinspiration is an unstoppable movement. Until our society stops telling young girls they can only be accepted if they are thin, pro-ana users will likely always find a place to unify on the web.

Eating Disorders: Body Language

06 Monday Feb 2012

Posted by a1000shadesofhurt in Eating Disorders

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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.

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