Fear of foodby Ruth Laugesen
Anorexia turns normal homes into “madhouses”. Genes are part of the riddle of this terrifying illness, but a new wave of treatment offers fresh hope.
Wellingtonian Nicki Wilson spends hours each week listening to parents who are struggling to help their daughters fight the harrowing disorder of anorexia. What they have in common is bewilderment and shock.
“What is going on inside the homes of the people who are supporting their children is indescribable.” There are the screaming fights over food, the insistence that “if you loved me, you wouldn’t make me eat”. There is deceit, the throwing of plates, the hiding of food, the frantic exercising when no one is looking, says Wilson, who supports parents as part of the Eating Disorders Association of New Zealand. Her daughter Emma, 18, has recovered from anorexia.
“One minute you’re a normal family who sit around the table every night for dinner, then all of a sudden you find yourself living in what feels like a madhouse. A war zone.” Another parent describes confronting anorexia as like being “in the devil’s lair”. For sufferers, the misery is even more intense, as they grapple with extreme anxiety, self-hatred, fear and shame, as well as ambivalence about whether they want to recover.
Kaye Adams, whose daughter Hayley, 25, has now recovered, is also part of the support network. Sufferers are “petrified. They’re terrified of eating. They have an irrational fear of food.”
What makes it worse for families is often their friends, neighbours and wider families are quietly judging them. The assumption is that this strange psychiatric illness must be the product of a dysfunctional family with unusual pressures, toxic conflicts or not enough love.
But a new wave of research has revealed that families are not to blame for the illness, and in fact are the key to dramatically improving recovery rates. A new wave of therapy developed in Britain in the 1980s, Family Based Therapy, has in the past decade been accepted by clinicians in the West as the leading treatment. In New Zealand, the treatment has been offered in selected areas for the past six or seven years, and been fully available around the country in the past five.
Auckland Regional Eating Disorder Service clinical head Dr Roger Mysliwiec says there is “absolutely nil evidence, zero” that a troubled family is the central cause of anorexia.
Instead, evidence has emerged that between 50% and 83% of the factors causing anorexia involve a genetic predisposition. A global research project is recruiting 8000 people to try to identify the genes involved. Possible genes include those involved in food intake, anxious personality traits and reward pathways in the brain. “The main message now to parents is ‘it’s not your fault’. It’s similar to as if your daughter was diagnosed with schizophrenia, or a physical illness such as diabetes,” says Mysliwiec.
Having a genetic predisposition in itself does not produce anorexia. Predisposed individuals are primed for the illness, then other relatively common factors come together to pull the trigger. The onset of puberty, with its hormonal changes, is one factor, as with it come changes in brain organisation and a time of heightened stress and anxiety. With girls reaching puberty younger, the age of onset for anorexia also appears to be falling, says Mysliwiec. His service has seen girls as young as 10, with 14 the average age of first presentation. In Western culture, girls – and to some extent boys – are bombarded with the message that attracting the opposite sex is impossible unless you are wafer-thin. Social media magnify anxieties over appearance. On Facebook, attractiveness is instantly, cruelly measurable. For teens who put up a new profile picture and get only 30 “likes”, it’s a cause for deep embarrassment.
Personality is another important ingredient in the mix. Sufferers tend to be perfectionist, obsessive, anxious and high-performing. They prefer predictability and are hyper-vigilant about mistakes. “An environment that emphasises high achievement and striving for excellence can bring out a lot of perfectionist tendencies and fear of failure in these predisposed individuals, whose anxiety system gets triggered when they feel they have made a mistake.” Adversity and stressful life events can also be a trigger.
Once genes, puberty and an obsessive, perfectionist personality come together, dieting is the final ingredient that activates a latent potential for anorexia. Although many teenage girls diet on and off, a few become fixated on weight loss and can’t stop. “Once the dieting starts, the genes get switched on and the whole cascade gets going. It can very quickly escalate and spiral out of control,” says Mysliwiec. Those with a predisposition to anorexia are able to ignore the urgent signals from their body to resume eating. “There appear to be some differences in the brain around reward-processing.”
FASTING IS A TRIGGER
British writer Michael Mosley’s hugely popular The Fast Diet, which suggests a fast for two out of seven days, could “absolutely” trigger anorexia, says Mysliwiec. “For a girl with that type of predisposition, fasting and food restriction is the main trigger of anorexia. Teenage girls should stay away from any kind of fasting.”
Once food intake is cut dramatically, starvation shrinks the brain and interferes with brain functioning, producing rigid thinking, emotional problems and social difficulties that compound the anorexia. Getting an anorexic eating again feeds the brain and makes logical thought easier.
Nicki Wilson says most parents must conquer intense feelings of guilt before they can help. “The despair is indescribable. At the start, when they say, ‘I’m going to start eating more healthily”, we think, ‘good on you, darling’. And so quickly, if they’re predisposed, their brain clicks, there are changes in their brain, and it begins.”
Says Kaye Adams: “I thought, ‘My daughter will never get anorexia; she’s lovely, slim, ate like a horse.’ Oh my god, how wrong I was. Yep, bang. She never showed to us any signs it was going to happen. She decided to be a vegetarian. Looking back now, that was the first sign.”
Anorexia is still so poorly understood by most people that not only is the family blamed, but so, too, is the victim. In reality, sufferers at this stage have little free will, so strong is the disease. Adams says friends admonished her daughter, telling her she was a burden on her mother. “Well-meaning friends did so much damage in her earshot. It dropped us back weeks and weeks in recovery.”
“Many people implied being sick with anorexia was a choice I was making,” says Emma Wilson, recovered and now at university. One person said, ‘Don’t you think you’ve taken up enough of everyone’s time and attention already?’ Anorexia loved hearing comments like this because then it could remind me what a horrible person I am, how I deserve to be sick, how I can’t do anything without hurting other people, how I’m selfish and attention-seeking … I was so consumed by anorexia that it came as confirmation that I didn’t deserve to be healthy and happy. The people that did make the effort to understand were my greatest allies, and they really helped me get well.”
A NEW APPROACH
In the 1960s, US-based therapist Salvador Minuchin pioneered the idea that anorexia was the result of pathological family dynamics, and that the illness could only be cured by altering the family structure. Treatment involved trying to unpick the psychological causes of the illness. However, decades of treatment based on his theories yielded dismal results.
Disturbed at how ineffective the treatment was, Christopher Dare and colleagues at the Maudsley Hospital in London developed a new approach in the mid-1980s that turned the old model on its head. Instead of blaming families, they brought families into the heart of treatment, giving them much of the responsibility for fixing the illness. The task families are set is both straightforward and impossibly daunting: get the patient to eat.
In 2002, the approach was developed into a manual by American psychiatrists James Lock and Daniel Le Grange. Family Based Therapy takes 20 sessions over about 15 months and coaches the mother, father and siblings to support the sufferer to eat in the home setting and urgently put weight on. Sufferers may initially be admitted to hospital if their condition is life-threatening, but after that they are sent home. Clinicians play a backup role, regularly weighing the patient and giving feedback.
In an early session, the family bring food to the therapist’s office to have a meal together. The therapist coaches the parents to work together to make their daughter eat more than the anorexia would allow her to. Nastiness and guilt trips are out, monotonous insistence is in. The siblings’ role is to empathise with the sufferer, not join in on the meal management. Anorexia is treated as a hostile invader, a common enemy, separate from the young person.
“When the young person is under the influence of the anorexia, it’s almost like their mind is completely taken over by the anorexia. The treatment is very much about getting the illness out and not worrying about the causes. This is like a malignant naevus that has been discovered on your skin, and it’s a race against time. This needs to get out,” says Mysliwiec.
Usually, one parent must give up work for a time and stay for weeks or months at home, acting as both jailer and coach. The mood in the family home shuttles between anxious calm, when the sufferer is eating, and intense conflict, as the anorexia uses every weapon to fight back. Parents are coached to stay calm and in charge, but they must battle their own fear and anger. Hospital readmission is at times necessary if the patient’s weight becomes perilously low again. Further down the track, as sufferers and their thinking improve, they return to school and begin taking responsibility for choices around eating, as long as they continue to gain weight. Any conflict between the sufferer and the parents can also be tackled at this stage.
The therapy may be gruelling for families, but it has brought a dramatic improvement in results. Although anorexia remains the psychiatric illness with the highest mortality rate, there are solid grounds for hope for most teenage sufferers. One study found that four years after treatment, around 90% of adolescent sufferers were close to their ideal body weight, and about 90% of the females had had their periods return. Mysliwiec says after 12 months of treatment, the likelihood of a full recovery is over 50%, and for partial recovery 70-80%. “In comparison, the other treatments achieved full recovery in just over 20% of cases.”
However, the message for older patients is still discouraging, with a more difficult path to recovery. Those who have had the illness for more than four years have the odds against them, although there are stories of recovery after 10, 20 or even 40 years. Long-term risks include fragile bones damaged by osteoporosis, poor circulation, cardiovascular problems and hypokalaemia.
Since 2009, a $26 million funding boost over four years has allowed training of clinicians in Family Based Therapy to be rolled out across the country. There are specialist eating disorder centres in Auckland, Wellington and Christchurch and specialist clinicians in local services in the Midland DHB area. In the South Island, services are centred in Christchurch, with outpatient treatment in six other centres.
Clinical head of South Island Eating Disorder Services Rachel Lawson says early detection and referral are critical, so her service has put resources into briefing GPs and school guidance counsellors. The service sees about 75 anorexia sufferers a year, more than 90% of them females. She says now that GPs are being educated, more boys and men are being referred. In Auckland, says Mysliwiec, education of GPs and guidance counsellors is being rolled out. The Auckland-based service sees about 100 sufferers a year.
In the Wellington region, says Nicki Wilson, parents have difficulty with some GPs who minimise anorexia symptoms or delay referral to specialist services. And she says although the Central Regional Eating Disorder Service is excellent once patients get in, referral is made more difficult by requiring sufferers to sign a long form describing their symptoms. “We had one case where it took three weeks for a mother to get her daughter to sign the form.”
The Central service’s clinical nurse leader, Nadine Woodley-Rideout, says GPs and school guidance counsellors have had some education, although there is always room for more. She says the service will look at its use of referral forms as a result of the feedback. She says younger patients can get an urgent appointment without using the forms, and parents can fill out the form on behalf of their children.
Mysliwiec says the best treatment is still early detection. Although anorexia is statistically rare, with fewer than one in 100 women developing it, and one in 1000 men, he advises parents to be watchful. “If you are concerned, the first step is to take your daughter to see your GP. Warning signs are if your child is exhibiting unusual eating behaviour like avoiding food or making excuses around eating, and especially if you observe the young person is losing weight. The earlier you go to treatment, the better the chances are for full recovery.”
For Wilson, the relief of getting her daughter back is still overwhelming, two years later. “You don’t go through something like this without being thankful every day.”
It’s the latest social-media beauty fad – the thigh gap. A clear space between the top of the thighs has become a desirable goal for dieting teens who post and re-post pictures of thigh gaps on social-media platform Tumblr. Along with the postings of thin legs are a slew of others of girls photographing their own thighs, with such comments as “shoot me”, “fat legs”, or “tomorrow no eating”.
In reality, acquiring thin upper thighs if you don’t have them naturally is only possible by becoming malnourished, says Otago professor of anatomy Mark Stringer.
“Only the malnourished or those with a slightly splayed pelvis will have a visible gap between their upper thighs.”
Although there is a layer of subcutaneous fat on the upper thighs, much of the reason the thighs are normally close together is because of the sizeable adductor muscle that runs up the inner thigh. Only by extreme weight loss will this muscle waste away and the buttocks lose mass, thereby creating a gap for those who do not naturally have one.
Eating Disorder Association of New Zealand: www.ed.org.nz; helpline: 0800 433269.
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