Anorexia Nervosa is a mental health condition; not just the desire to be slim. Early treatment with someone who understands it is crucial. If you are a carer or student please also read our article
Phases of Restrictive Eating Disorders
& other documents for carers - also on our information pages.
A brief overview by Deanne Jade, Director NCFED. For a more thorough understanding of anorexia nervosa, the reader is directed to professional texts in our book section. To understand anorexia, we first have to understand what an “eating disorder” means and where anorexia fits. Eating disorders are characterised by excessive concerns about shape and weight, leading to some harmful weight-control behaviours. People with eating distress attach great importance to how they feel about their weight and shape and their body image is poor. Eating disorders are not aspects of other mental health conditions like depression, although most sufferers are miserable and obsessed. The question “do I / does my child have an eating disorder?” is often asked by people who come to our practice. Even the label “eating disorder” is contentious because this implies that there is something we call “normal eating” which is gender and culture-specific. In 21st century Britain, many people are dieting, struggling to lose weight, overeating, eating for comfort, avoiding carbs or eating very little because they are stressed or depressed. This article contains information under the following headings which you can scroll through. If you think that we might add anything useful please let us know. Books which are useful for anorexia are listed in the book area of our website. Information which may help carers is in the information section of the website, including what to look for in a therapist.
What is anorexia nervosa?
There has been a lot of argument about eating disorder “labels,” but we need a way to define the suffering of people who struggle to eat properly. We do not diagnose an eating problem in the same way as we diagnose illness, instead we “categorise” them. Anorexia nervosa is how we categorise food restriction which is severe enough to affect physical and emotional health. Anorexia is not a particular weight- although many people are refused help if their BMI is not 17.5 or less than expected. This myth explains why people do not get treatment when they need it. Anorexia is also a mindset. It takes an eating disorder expert to recognise how serious the food restriction is and whether eating disorder symptoms – expressed in terms of behaviour – are likely to get worse. It takes a medical practitioner to determine the risk to health. Mark is 14 years old. He is a sensitive, intelligent lad who is interested in sport and he represents his school for Cross Country Sport. To toughen himself up, he has been training more than he used to and when he comes home, he insists on only eating only protein because his coach advised him to cut down on carbohydrates and junk food generally. His parents notice that he is quieter, spends more time alone in his room because he has a lot of homework and he seems to have lost some weight. A visit to the doctor has been unhelpful since Mark is not worryingly thin right now. Mark says that he is fine and that he is just under a bit of stress. The word ANOREXIA means “appetite loss of nervous origins”. It is not the same as the loss of appetite that comes from overeating, from illness, or from emotional stress. Some people find that they cannot eat when they are afraid or depressed, but this is not anorexia nervosa. To put it simply, anorexia nervosa is a mental health condition with “refusal” to maintain a normal body shape and weight. It is motivated in part by irrational and extreme fear of food or of foods considered to be fattening and or impure like meat or fats. Anorexia can start silently as an attempt to feel better by losing a bit of weight in someone who at the same time has underlying “deficits or life skills” that make life hard to cope with at that point in time. Most people cannot wait to get to the end of their weight-loss efforts, but for someone with anorexia the weight loss efforts intensity by eliminating more and more foods or meals and by increasing levels of activity. During this period, some degree of secrecy creeps in. People may try to eat alone and pretend that they have eaten elsewhere, throw away packed lunches and possibly do a lot of star-jumps or sit-ups in their room. They might scour the internet for advice about healthy eating or more dangerous methods of controlling their hunger. Sufferers go to great pains to convince others that they are OK by maintaining a “normal way of life” as far as possible, despite eating very little. They will try to be cheerful despite the concerns of others which are brushed aside. At the same time, they become very angry if there is any attempt to confront them over their behaviour. Carers describe their loved one as having a change of personality. A child, once compliant and obedient,becomes a demon if they suspect that there is a gram of butter on their broccoli. An open, loving person becomes evasive, hostile and refuses to participate in family occasions where food is involved. Anorexia does not always begin by a motivated desire to weigh less. Some people who were never fat become obsessed with idea of preventing weight gain. Males often begin by thinking that they wish to be fitter. In some people the illness begins unconsciously I don’t eat carbohydrate or fat because it makes me bloated and I don’t eat meat because I love animals and I run just as much as other people do; it makes me feel good and I just happened to have lost 20 lbs. As time goes by, there is a progression which varies from one person to the other. About 2 out of 5 people begin to binge eat although the amounts are small and then purge by vomiting or using laxatives to avoid weight gain. This is known as anorexia of the bulimic sub-type (AnBn) and is the most dangerous form of anorexia with poor prognosis. Anorexia is not a phase or a silly moment that will pass. It is not a slimming disease. It is a condition with an average lifespan of seven years during which time there is a great deal of damage to health, life opportunities and collateral damage to family relationships. It has the highest death rate of any other mental health problem and 1 in 5 sufferers can die in the long run as a result of poor nutrition and its effects on mental functioning. That is the bad news; the good news is that 8 in 10 people eventually recover, although the illness will leave its scars.
Features of anorexia
Here are some of the features of anorexia Weight loss, or failure to thrive and develop normally in young people. Intense fear of eating or eating certain foods which are viewed as dangerous. Eating habits may become bizarre, there is more food-souping and an increase in the desire to spice up food which is a way of managing hunger. There is a gross disturbance in how the body is experienced. Irrationally, the thinner an anorexic becomes the fatter they can “feel”. There is no target weight, the aspirations of someone with anorexia is “weighing less” and any small increase in eating or weight is experienced catastrophically. These experiences are irrational and there is no point in arguing against them. Can’t you see how thin you are! You have lost enough weight can’t you see that. Have you looked at yourself you look terrible! Mood changes set in- usually depression, anxiety and withdrawal from wanting to do things with friends. There may be an increase in odd rituals like eating foods in a certain order. I have three boiled sweets on the go at any one time. I suck one for a minute each day then put it back on the shelf. Obsessive interest in food and the qualities and calorie values of food. This interest extends to wanting to cook or provide food for others without needing to eat it themselves. Contrary to what many people think, people with anorexia are very hungry although they will deny it. They will make great efforts to find ways of managing their hunger such as chewing gum. In chronic cases appetite can disappear. Restlessness and poor sleep. Strenuous exercise is a feature of anorexia and is most probably a means of reducing anxiety or keeping warm rather than burning calories. People with anorexia predictably hear a Voice which emerges during the initial period of weight loss. This voice is real and concrete, persuades, encourages, berates and threatens. It varies from one person to the other, it can be a hiss or a growl and is louder than anyone in the real world. Laura Freeman in her book The Reading Cure describes the Voice like this The monstrous voice I had battled with for years… spitting against the filthiness of eating, the shame of appetite; those bullies and demons came roaring back…. Anorexia has so often seemed to me something demonic, something foul squatting on my chest like the demon in Henry Fuseli’s Nightmare, or a raging Jabberwock. A predictable anorexic mindset (reinforced by the Voice) which again is full of irrational ideas about food. Examples of typical anorexic thinking: If I were to start eating again, I will never stop If I eat a piece of toast, I will gain 3 lbs I was unhappy when I ate bread and I would be unhappy if I were to eat it again. I don’t need food in the same way that others do I would not want to eat like you Some of these features are not anorexia; they are simply the result of low weight, starvation and its effects on the body and brain. They resolve if a person eats a more nutritious diet and is weight restored -although telling people with anorexia that they will feel better if they were to eat more is unhelpful and they will not believe you.
What causes anorexia
There are many different explanations for anorexia and many different proposals about how it should be treated. I will mention some of these explanations and treatments below. The reader may note three important things: 1 It remains the most difficult to treat of all mental conditions. 2 Most experts, despite differences in how they think about anorexia, agree that what starts off as a way to feel a little better and happier, becomes adaptive. This means that the condition becomes useful. For example, it can become a way to feel special. It makes some people happier despite the costs. It can be the only way a person knows to express emotional pain. 3 Experts agree also that there is no cause of anorexia. Instead there are risk factors that make it more likely that anorexia will occur at a time of poor coping. This involves the notion that there are predisposing factors and precipitating factors (triggers). This has important implications for treatment. Traditional psychotherapy looks in detail at childhood experiences and tries to find causes of mental problems in the expectation that finding a cause fosters healing and recovery. Everyone needs to have someone experienced and supportive to hear their backstory and understand who they are. But this kind of investigation does little to bring an anorexic into a normal relationship with food and the ability to take care of themselves. Something more is needed. The risk factors for anorexia include some or all, of the following;
- The culture; which places unremitting pressures on women particularly to attain an ideal appearance that is impossible. This will impact on people who have a high need for approval and poor self-confidence.
- Genes – anorexia runs in families and if one identical twin becomes anorexic the other is likely to do so.
- Core personality which requires further explanation. The future anorexic is sensitive, perfectionistic and anxious. He or she probably has an over-developed need for approval for diverse reasons. Some theorists propose that perfectionism leads to a stress disorder or alternatively a history of trauma if the person fails consistently.Anxiety is common before the illness sets in and can be an early symptom before a person turns to food restriction. Anxiety can show up in obsessive compulsive symptoms in childhood and OCD may persist after recovery. Writing in The Reading Cure, Laura Freeman describes how she must continue walking for hours around the streets of London, rain or shine. She seems unable to sit at home and have a lazy day off. Anxiety might also (arguably) be a symptom of coping problems in someone with mild autistic presentation. For a nice description of autistic anxiety, read The Curious Incident of The Dog in the Night-Time. I would spend hours arranging my china horses just so in my bedroom. I had to check everything; is my bed properly made, did I close the window, are my shoes lined up?Cited in Fairburn, Binge Eating: Detailed investigation of the inner world of the eating disorder patient is an omnipresent fear of seeming weak inadequate and average, inability to take pleasure in leisure activities, a reluctance to confront risks and novelty; to engage in uninhibited spontaneous action or to assert feelings, and the experiencing of impulses and desires as wasteful distractions to achieving higher moral objectives;…. to have been compliant and conscientious as children, tend to be solitary and have had difficulty mixing with other children. They are competitive and set themselves high standards.
Michael Strober UCLA, expert in personality writes: She or he is high risk averse, with maturity fears, high levels of persistence to tasks in hand, is aversive to change and uncertainty, and has ascetic drives – where asceticism is a motivation to be free from the demands of the body. A relatively high proportion of patients do not nor ever had, a close sexual relationship and appear to have an abnormal developmental trajectory; stuck in an early phase.
- Poor central coherence” which is how the brain processes, organises and prioritises flows of information and which make it hard for a person to shift attention and see all sides of an issue. Anorexic patients often do have problems with self -organisation, prioritising, seeing the big picture and being unable to distract themselves from unfavourable thoughts. Note: Poor central coherence is a feature of Autism.
- Appearance teasing or weight comments, both among peers and at home. Women are particularly affected by dieting behaviour of mothers and appearance comments made by fathers.
- Experiences which have rendered an individual unable to recognise and deal with emotions especially bad emotions such as anger or disappointment. This could be due to methods of upbringing where it feels forbidden to express emotions or, if one has a bad feeling one is charged to deal with it alone. It is interesting to note that most people with anorexia have difficulty expressing and managing a wide range of emotions. In his work with adolescents, Daniel Goleman, expert in Emotional Intelligence, notice that young people who were unable to recognise their own bad feelings were more likely to develop eating disorder behaviours.
- Physical or sexual abuse is not a common risk factor for anorexia.
- Psychoanalysts have many different ideas about what “causes” anorexia. For example, one school of thought proposes Em Farrell that anorexia emerges in a person who has met disapproval for trying to be themselves; that they exist simply to be a mirror and possession of their parent. They will grow up being unable to take proper care of themselves and anorexia is a response.
- In her book The Golden Cage, Hilde Bruch suggests that anorexia is caused by faulty parenting. By responding inappropriately to a child’s need for care-taking, a child will grow unable to meet their own needs properly and will lack a robust sense of their own identity.
- An early expert in anorexia, Professor Hubert Lacey, suggested that emotional conflicts early in childhood would require a retreat to childhood to avoid the need to become a sexually mature adult. Alternatively, Professors Arthur Crisp and Bryan Lask, believed that anorexia is present “from birth” and that it would be unleashed by adverse circumstances at times of stress or change.
When does anorexia begin?
Anorexia is invariably triggered by some form of loss, stress or change that cannot be managed effectively. This could be in life circumstances like facing exams at school or if there is stress at home. It could be loss of friendships or a beloved pet. Some people cannot cope well with the physical changes or the emotional storm of puberty. Why is puberty so difficult? It brings challenges to a sensitive child, who may fear that he or she is not up to the task of growing up. This is a time when we start to break away from our parents and turn toward peers to forge our sense of self. Will we be a “goth” this year or a “rock-chick”? Can we handle sexual challenges? We make our own decisions and mistakes. Managing all this demands a certain degree of confidence together with ways to solve the problems of a chaotic and uncertain life. Without this sense of optimism, it may be too easy to retreat harmful coping strategies like drugs, alcohol, rebellion or a life of anorexia. Anorexia has simple rules to decide how well he or she is doing. Only a detailed and careful history will identify when the anorexia really began, and this is usually before most carers identify any of the more worrying symptoms. For example, we know that a decision to stop eating meat which is deemed “a good thing” often precedes the onset of food restraint behaviour. I have identified the early whispers of anorexia in children as young as 7 who, for sensible reasons have decided that they will no longer “eat animals”. It s worrying that anorexia is most commonly (but not always) “triggered” at puberty, since the brain changes during adolescence through a process known as synaptic pruning. Behaviours which emerge during a time of neural re-organisation can become stuck unless addressed as quickly as possible. Other times; Anorexia can begin at any time of change, such as after having a child, or getting old. There are many anecdotal reports of elderly people who refuse to eat. Worried carers and clinicians suspect that older people have hidden illness or rebelliousness which may be attention seeking. The author has friends who have bribed and cajoled an elderly emaciated parent into eating a little more. The digestive, physical and emotional consequences of ageing complicates the picture and makes diagnosis difficult. We do not understand why the old are vulnerable. Digestive changes can make a person feel fat and bloated when they eat, which triggers concerns about weight gain alongside the emotional effects of ageing which cause depression. The anorexia of old age is known as Anorexia Tardive. We do not know how to manage it.
How we understand anorexia
There are many different explanations of anorexia and I will mention a few of these briefly with references if you wish to learn more. There are thousands of books written by professionals and hundreds of personal accounts written by sufferers which explain the horrific experiences of anorexia but do not quite explain what having anorexia means. Some of the explanations of anorexia include;
- It is a “monomania” not unlike the mindset of someone who climbs mountains despite injury and risk of death; who becomes obsessed with their quest to go further and higher and who will sacrifice family life and their own personal health to meet the demands of their obsession?
- It is a “cry for help” in someone who lacks the capacity to express their unhappiness in words.
- It is a form of schizophrenia. The anorexic Voice would lead some people to assume that anorexia is a psychosis. Anorexia is regarded as a “compartmentalised psychosis” which creates a compulsion to avoid treatment or only to accept treatment which they know will not succeed.
- It is a gendered / culturally derived condition. Feminist writers such as Susie Orbach and Naomi Woolfe write about anorexia as a form of hunger strike, a way of managing pressures imposed on women to be successful and at the same time conform to a slim and submissive female stereotype. Feminist writers regard these pressures as being designed in a patriarchal society as a means of keeping women “in their place”. This does not explain anorexia in males.
All explanations of anorexia are thought-provoking and should be read by carers and professionals alike to help make their own sense of this condition. While experts differ in their understanding of anorexia and quarrel about which treatment is best, they all agree that what begins as an attempt just to feel better by losing a little weight becomes a very stuck condition which is resistant to help.
Who gets anorexia
The answer is “mostly girls, dieters, and mostly in early adolescence” although there are many male hidden sufferers in the sports and fitness industries in particular. We look at male anorexia later in this article. Anorexia appears in young children and also in the aged in nursing homes where is it invariably not recognised. (Anorexia Tardive). Anorexia can appear at any time of change such as after having a child or suffering divorce. If anorexia appears in adult life, it is possible that there was an earlier episode. I do not like to talk about typical patients because everyone is different. However many people with anorexia are sensitive, risk averse, compliant in early life with a desire for people to think well of them. People who develop anorexia are likely to be introverted and inhibited; perhaps feeling that they do not deserve to share their opinions with others. It is said that they have maturity fears and lean toward an ascetic personality style which expresses itself in a desire for purity and simplicity. They do not like mess and uncertainty.
Is anorexia a cultural illness?
There are arguments for and against. Accounts of behaviour that look like anorexia go back a long way. There are stories of starving religious ascetics – or “fasting saints” as far back as the 11th century and an analysis of their stories by a psychologist, Lorraine Bell, identifies them as anorexics, some self-harming. In the 19th century, people flocked to the bedside of Sarah Jones, The Wonderful Child in Wales, who lived without seeming to eat any food at all. We cannot know about the prevalence of anorexia in Third World countries where there is barely enough food for survival. There may well be cases of anorexia among local populations which are explained away as something else. The 21st century has seen an unparalleled media onslaught especially via social media, of pressures to attain unrealistic body size and shape. There can be little doubt of the effects on insecurity, both on females and on males and the prevalence of eating and fitness plans designed to take control of weight and shape. We are concerned about an apparent general explosion in poor mental health among young people and rates of eating disorders appear to be increasing overall. However, it would be misleading to suggest that anorexia is simply a slimming illness, which it is not. Pro-anorexia websites and the use of Instagram and other Apps do perpetuate dangerous eating and weight control practices. Some of the advice which is proffered both by these sites and by blogs written by untrained egotists exert a dangerous influence on people who are vulnerable emotionally, who lack self -confidence and who are too young or misguided to rationally assess the material they read. People with anorexia need guidance on how to manage social media if they have any interest in recovery.
Why is anorexia hard to treat?
Understanding anorexic resistance is one of the keys to successful treatment outcomes. It is a great mistake to rush into treatment assuming that our enthusiasm for change or our wresting control from an anorexic patient will do the job. If there is a medical emergency, we have no option other than to make an emergency intervention, but it will always be necessary in the long run to work through ambivalence about change. Some resistance is common sense – after all there will be fear of weight gain. They will wish to give up some of the worse side effects and still stay thin. Many say they are frightened of losing control but what does this mean? It is normal to want to feel in control but there are many things in life which we cannot control and part of being an adult is coming to terms with this. We think that they are most afraid of losing control of their emotions which have been dampened down by starving. If their presentation is autistic, they will fear being present in the world which feels overwhelming when they stop attending to the voices in their head. Here are some of the secrets which make people with anorexia very resistant to treatment.Starving is one thing that they are good at when they do not feel good at anything else no matter how much they have achieved. Because of this they may come to see anorexia as a kind of friend or guardian angel. Dear anorexia, my friend. You are there for me when no one else cared about me. You keep me safe and you help me to feel in control. Everyone is against me and everyone is on my back, but I can always trust you to look after me. They have spent a long time and put much effort into achieving a low weight and it will feel like a waste of time and effort to just stop. This is called “sunk cost thinking” and it is very strong. Anorexia is a statement. It says I am in pain (but I don’t know what it is about). Unless we uncover this pain, there will be no motivation to change. They get to feel special and different from people who are normal. This makes them feel proud and is a powerful defence against core opinions they have about themselves. Most people with anorexia have a history of inferiority and feeling out of control in other domains of life. This combined with denial that there is a problem is like a coat of armour that no one can penetrate. Most people who are alcoholic may deny that they have a problem, but few would say that alcoholism is a good thing. In contrast, people with anorexia can wear their eating disorder as a “Badge of Pride” which is reinforced by mantras. No pain no gain Hunger is a sign that I am strong Eating is weak, carbs are bad. Fat is bad. Beat your stomach every day to keep the hunger pangs at bay They can become infatuated with their low weight and skeletal appearance. I would spend hours in front of the mirror, admiring my bones, the way my ribs stuck out, my hip bones like coat hangers. There are still some bits I need to reduce a little. Who wouldn’t want to look like me? It makes life simple and reduces mess. Dieting has clear simple rules for performance which suits the personality of an anorexic. Fearing food displaces the overwhelming fears of other things in life (like relationships) which they may be unable to manage. What else am I afraid of? I don’t know, I am afraid I will fail my art exams; I am afraid that no one will like me; I seem to be afraid of everything, come to think of it. Anorexia is useful in suppressing sexual feelings and experiences like menstruation which are distasteful. I used to fancy girls, but I’m not interested in them anymore. It doesn’t bother me at all. Anorexia brings attention which is both desired and rejected. It can elicit care-taking from people but at the same time the illness says I don’t need you and I want you to leave me alone.This is very confusing to carers. It is wrong to suggest that people with anorexia are “attention seeking” – the illness brings attention which is most needed but also most feared. My father has never been nasty to me since I got anorexia. My brother got a lot of attention for being naughty when I was little. I just faded into the background trying not to make anyone unhappy. Anorexia can be useful in bringing together warring parents or carers to unite in their attempt to manage the illness. My parents split up and my dad has gone to live with another woman. I would like to call her the wicked witch because she said he doesn’t need his old family any more. I still want to feel special to him. The anorexic person has no defence against the Voice which threatens consequences if it is disobeyed. You’re nothing without me Ana cries, another one of her crazy lies… she will always find a way of creeping into your mind. (Charlotte Crilly: Hope with Eating Disorders) Those sirens would never have allowed me the saffron buns. Gluten! Sugar! Butter! … I gave it all up again. Did the illness sense that I had been winning? Did it thus return vengeful and furious to punish me for galettes and honeyed yoghurt? Freeman, The Reading Cure Some sufferers say that the only way to suppress a huge noise in their head is not to eat. Eating will bring the noises back.Physical changes of low weight and poor eating work to make eating difficult. People with anorexia develop a range of digestive disturbances like constipation, poor digestion and stomach pain which confirms that they may not eat. Brain function changes due to starvation which makes it hard for someone restricting food to think clearly. Despite starving, he or she can still do exams, write essays and gain First Class degrees at college. But emotionally, a person with anorexia has regressed. We believe that therapy only works if BMI is greater than 17 although this may not apply to everyone. It is a compelling argument in favour of re-feeding before much of the work of psychotherapy can begin. Core low self-worth in someone with severe anorexia makes eating feel undeserved. Horrible, irrational but deeply held beliefs about oneself make it hard for someone with anorexia to wish to survive. It is no use convincing a person with anorexia of all their good qualities, self-worth is something that is felt in the heart, less so in the mind. There is a secret I don’t tell anyone about me, that basically…. I am just a waste of space. Deanne Jade writes in the forward to Dr Nichola Davies book “I Can Beat Anorexia” – she knows that recovery is not just eating more, it is feeling better about yourself so that eating is deserved, and low weight no longer holds the promise of escape from pain. Anorexia is useful because a starving person cannot feel their emotions, which feel forbidden. Might it be worth offering the reader a “schema focused” explanation about why people may need anorexia? Schemas are belief systems that also contain memories of experiences. We believe that people with anorexia, for unknown hidden reasons believe themselves to be impure, contaminated and unworthy to express their feelings. They carry a lot of irrational shame. This might explain why with individuals with anorexia have a strong drive for purity (asceticism). It is unsafe for someone with anorexia to experience emotions, especially negative ones because they will feel “too much” and they will bring forth feelings of shame for even having feelings in the first place. Starving blocks feelings and anorexia is useful for blocking the beliefs about oneself which follow from having difficult emotions. The drive for purity may not disappear with treatment and explains why some people recover from anorexia only if they are able to eat clean foods or remain obsessed with healthy eating. Resistance to change results in the kind of behaviour seems to thwart treatment. There is deception, secrecy and game playing. Everyone is discouraged. We believe that it is pointless to blame someone with anorexia for behaving anorexically. They are terrified of change, they resent the focus on food, and will argue that there is a conspiracy to “make me fat”. I sprinkle some cereal in a bowl, and put a bit of milk in, and put the spoon in and stir it around. Then I leave it on the side and my mum will think I have had my breakfast. Sometimes I shake the crumbs out of the toaster and leave it on a plate. They think I had a snack. I do 100 sit-ups in my room because they won’t let me exercise. 5 times a day. More if they got me to have an extra bite. I hate myself. People with anorexia may not be consciously aware of their arguments against change because they live from one day to the next, focused mainly on maintaining the status -quo, and trying to stay in control. Resistance to change will persist even if people start thinking that they wish to get well. Motivational work is an essential part of therapy for the condition.
Side effects of anorexia
The Sufferer Starvation and malnutrition affect every system in the body, metabolic, digestive, skeletal, endocrine, neurological, and circulatory. Mental, mood, thinking and the ability to make decisions is impaired. Because of changes in the chemicals of mood which are nutrition dependent, there is a heightened risk of suicidal thoughts. The most immediate effect of starvation is on sex hormones and bone density. Adolescence is a period in which new bone is laid down and so the effects of starvation will affect bone density for life. Any person wishing to know the full extent of the effects of anorexia might read Sick Enough (see the books section on our website). You may email us for a handout we give to sufferers detailing the main effects of low body weight. The Family Anorexia causes collateral damage to families. Some carers in early stages deny that anything is wrong, even when their child’s behaviour gives rise to concern among schoolmates or people who may not have seen the child for a while. Perhaps the anorexic is expert at hiding how much weight he or she has really lost, or it may be due to a family tendency to shy away from drama and problems. Parents may be worried in case their child falls behind with their schoolwork or loses their place on a team. If the child appears to be keeping up, they do not want to rock the boat. Anorexia brings out the worst in family members. They say it is like having a person with cancer but what differs is that this seems “self-inflicted”. There may be arguments about what to do, how to deal with eating refusal, deception and rebellion. Anorexia thrives in an environment which is full of discord. Everything is affected, holidays, meals out and festivities. Some members of the family, such as the siblings, find their needs are ignored. A family which comes to terms that their loved one has a severe and possibly enduring mental-health issue, experiences a sense of bereavement. They have lost the life which they expected their loved one to have, such as completing an education, having relationships and families of their own. They are conflicted about needing to take care of someone who they believe should be taking care of themselves and is not doing so. We know that the effects of anorexia on families can make the illness worse. For this reason, a care plan will ideally include key members of the family to help them manage themselves and help their loved one fight the illness better.
Anorexia is a progressive condition with many phases. The weight-loss phase is called acute anorexia. When weight is first lost, the anorexic may get admiring comments which reinforces their feelings of success and they may appear much happier for a while. They feel in control but soon discover that the anorexia goes out of control and they are unable to stop themselves from losing weight. There is no “enough”. What sets in is a more profound process that we do not even now fully understand, of fearing food inside, of feeling horrible when it is inside you, of only feeling safe when you are empty” (Christopher Dare) The year after our marriage I began calorie counting, cutting out some foods missing out meals and began speed walking. My weight then dropped to 7 stones, I felt utterly miserable with life but boosted by my weight loss and the control I had over refusing food. I worked as a Doctor’s receptionist at the time and a colleague, an older lady noticed what was happening and nurtured me out of the cycle I was in. To my delight I became pregnant…… But then: My husband spent a lot of time away from home and began working 7 days a week as well. I began eating less and less, was extremely physically active during the day, going to the gym 3 evenings a week and then discovered laxatives. I felt fantastic; I could go all day with just eating an apple or a grapefruit and drinking lots of coffee. A customer asked me if I was competing in the thinnest woman in the world competition. My weight got down to 5 stones 9 lbs. The chronic phase is where weight is maintained and there may be small ups and downs. Some people are very impaired and may have had to give up their education and a career. Others have medical crises from time to time. I want to be well enough to go to university and I manage to eat a little more for a couple of days then I feel huge like an elephant and don’t carry on. They told me I am chronic so perhaps there is no point in trying to get well. High-functioning chronic anorexic people manage to conduct a normal life with a very small food intake. Anorexic females may continue to menstruate and even have children. Recovery is possible only when the person reaches a Turning Point, where they decide that they do not wish to live like this anymore. There is no one way or guaranteed time for this Turning Point to show up. Some people decide to fight their anorexia because they have fallen in love, or have had the right therapist, or don’t wish to feel ill and cold all the time. My daughter was constantly pleading with me to put some weight on but it was a photograph of me at our work Christmas party that made me realise how thin I had become. I found (a message) dated 2014 from my dad forwarding a message from the NCFED about ‘how to find an eating disorder therapist’. At that time I was deep in my eating disorder; I was terrified to eat more and denied that I had a problem, but a small part of me knew I couldn’t go on driving myself crazy thinking about food 24/7. So, I reluctantly gave in and started to see a therapist, which turned out to be a big turning point in my relationship with food. Not all anorexics recover. Prognosis depends on speed and extent of weight loss, having a supportive family who are taught to say and do the right things; age of onset and duration of illness. People who get anorexia at a young age have a good chance of recovery. The best predictor of successful treatment is getting help QUICKLY, not waiting until someone is “thin enough”. We cannot stress this more firmly. The battle to recover from anorexia, once a Turning Point is reached is harder than remaining anorexic.
There are many possible treatments for anorexia, none are guaranteed to work. It is very important for Carers to know this, although we can reassure carers that most sufferers recover fully or partially from their condition and go on to live normal lives. Treatment aims to enable someone to eat a wide variety of foods, in different contexts and with other people without restraint or shame. Eating will feel deserved which implies that the person has a restored self-esteem and is able to take care of themselves in many ways, including by eating. It will no longer be important to be thinner than everyone else.
Inpatient vs Outpatient
Outpatient treatment is preferred. The benefits are being in a service with people supposedly with understanding of eating distress. In a specialist service, aspects of eating disorder presentation (being competitive) emerge in dedicated settings to make the problem even worse. Why do I need to eat? There are people here that are thinner than me. I cannot be all that ill (Lily BMI 13). If I am not thinner than others, they will think I am fat (and weak). Or they learn to eat for the wrong reasons: I decided to eat and eat so that they would let me out and I could go back to being how I was before.
Treatment must do all the following
1 Address motivation and ambivalence to change.
2 Engage with the sufferer. Engagement with a therapist is an important missing piece. The anorexic person comes to therapy with intrinsic mistrust of other people and ideas that everyone is interested in making them fat and out of control. The firs thing most anorexics do is scope out their therapist. She wants to make me fat like her. I wouldn’t want to look like that. She is thin, I bet she is anorexic too (so why should I change?) It is crucial for a therapist to be aware of their own issues and show eating disorder expertise by reflecting the hidden secrets of the anorexic mindset. We use hip-pocket patient understanding “I expect you to have mixed feelings about change” and to show no anxiety about weight loss (even if we are worried). Engagement also means forging a connection with the family and other members of a treatment team. Many treatments fail because or poor communication.
3 Re-feeding to correct harms, prevent emergencies and restore weight (not just make fat).
This must always be done under the guidance of a dietitian at all stages until a normal BMI is reached. In severely malnourished people there is risk of hypophosphatemia because of organs that have been damaged by starving. Medical emergencies can only be identified by a doctor who is trained to do specific investigations. In some cases, tube feeding will be given to people too ill and weak to make rational decisions for themselves. While this aspect of treatment is hated at the time, people are often grateful that they were given extra help. The powers of the Mental Health Act can be invoked if the person is at risk of death. This is a safe procedure and some patients prefer feeding through a nasal tube because they feel they cannot tolerate the required amounts orally. Complications are rare but can include pulmonary haemorrhage, empyema, oesophageal perforation and pneumonitis. Fater 2005. The experience is invasive, stressful, frightening and has the potential, especially if restraint is involved, to mirror the dynamics in someone who has previously experienced abuse or trauma. The resistance to the tube is interpreted as an expression of strong views, although in practice patients may tolerate the procedure well. There are guidelines for good practice with adults in such situations. Goldman, Birmingham and Smye in Handbook of Treatment for Eating Disorders Guilford Press 1997, but there is no guidance for younger patients. Thankfully, there appears to be no obvious association between resistance to tube feeding and eventual outcome.
When asked to reflect on their experiences, young people in this study could be divided broadly into two camps, the first viewed the experience as horrible but necessary. Some patients even those viewing it as an ordeal were thankful and viewed it as a first step toward their recovery. Lask et al 2001, International Journal of Eating Disorders. Now looking back, I simply couldn’t see the wood for the trees, for I didn’t then, want a life. However now three years further on, I really know I can see tube feeding is the only last resort with the person’s best interests in mind. Without the help of the tube I know I wouldn’t be here now. Tube feeding can have unexpected outcomes which maintain the disorder. A patient can learn to give up eating altogether. But this is rare. Needing a tube is proof that I am worse than everyone else. That is a real achievement. I let them feed me by tube at night. It means I don’t have to struggle to eat on my own. I don’t need to eat during the day.
4 Psychological strengthening
This helps with re-feeding and protects against relapse. Psychological strengthening is a huge task and is designed to make a person feel happier, effective, able to manage their feelings and deal with destructive anorexic thinking. It provides the message that therapy is not just about eating and weight, it is about helping the person flourish. Therapies that help with psychological strengthening include CeBT, CBT and Cognitive De-fusion, Flexibility Training, Compassion Focused Therapy, Assertion Training, Emotional Resilience Training and work on non-anorexic values. Positive Psychology Therapy works well for rebuilding damaged self-worth.
The success of these therapies depends on the skill and resilience of the therapist and their relationship with the anorexic person. Some patients with anorexia are autistic and find it hard to trust. Autism treatments include cognitive remediation to help re-wire the brain, and story work.
Trauma, if it exists may interfere with treatment. Traumatised people benefit from new wave therapies such as EFT, EMDR and Sand Tray Therapy. Dialectical Behaviour Therapy is exclusively useful for anorexic patients with obstructive and dangerous behaviour patterns such as rage and self-harm. NLP (Neuro-linguistic Programming) is a powerful therapy that targets fixations, irrational unwanted thought and the Anorexic Voice. NLP can harness the power of the unconscious to change behaviour and get anorexic “outcomes” such as safety and pride, in more healthful ways.
5 Family work is important for people of all ages but especially young people still in the care of their parents. It is designed to support and guide carers in helping their loved ones to take control over the disease from a no-blame position. Families benefit from linking with those in a similar situation and from having ongoing support via workshops and ongoing support from an eating disorder specialist. All carers benefit from learning the Animal Model developed by the Maudsley for how best to relate to someone with anorexia and how not to make the situation worse. A copy of the Animal Model document is available from NCFED by request. The Maudsley have a carer-aimed treatment model which teaches carers how to coach their loved one toward recovery. The model is flexible and can be self-taught using Skills-Based Caring for a Loved One with an Eating Disorder by Janet Treasure and the Succeed DVD How to Care for Someone with an Eating Disorder.
6 Relapse Prevention
Preventing lapses is an important part of this work. The illness can return at any time of stress or change such as marriage or having a child. Therapist and suffers will need to anticipate future problems and design a “what if” programme of care. Laura Freeman describes her relapse in vivid terms. That summer…. A very different sort of food writing began to appear in the newspapers and magazines that crossed my desk each morning…. This was clean eating, green eating, lean eating, food from a scrabble board: kale and quinoa, chia and avocado, agave and baobab, goji and amaranth…. Eggs? You got no points for those. ….. It was an absurd parlour game of substitutions, courgette spaghetti, cauliflower rice, coconut yoghurt, cashew cream, buckwheat porridge, almond milk, hazelnut milk, hemp milk, a lurid cheesecake of avocado flesh. What started on blogs and photo sharing websites spread to the newspapers, first on the lifestyle pages, first as a joke later in earnest; Then to the recipes pages, the health pages, the retail pages, every bookshop promised wellness with wheatgrass juice, glow, detox, nourish, delicious, good simple, meat-free gluten -free dairy-free sugar- free….The sirens came roaring back.
Some approaches which have a good track record with anorexia
CBT-E has a good evidence base to help free people from the intrusive horrible thoughts of anorexia and manage their emotions better.
The Maudsley offers the following programmes for anorexia and have a range of films available online to help people who have anorexia in the family.
FREED – A rapid response programme for early cases of anorexia.
MANTRA – a programme for adults which addresses the elements which maintain anorexia such as selective attention, ascetic values, fear of feelings and anorexic aspirations. Prof. Janet Treasure of the Eating Disorders Service of the Maudsley Hospital explains (I paraphrase); The model works to understand the factors that may be linked to underlying personality qualities such as being an introvert, sensitive anxious and/or perfectionist. These personality traits can magnify as a result of starving causing the illness to progress and the person can develop beliefs that their illness helps them manage life better. The therapist explores their strengths and non -eating disorder life aspirations and informs a treatment plan which includes behavioural experiments to change some of these patterns and develop new skills. Hopefully this will change some of their rigid eating behaviours. We supplement this with a workbook A Cognitive Interpersonal Therapy Workbook for Treating Anorexia Nervosa (Schmidt 2018) which can be read alone or together with a therapist.
Family Based Therapy is a system of treatment where parents take ownership of managing all meals and other behaviours of their loved ones, it is a huge commitment of time and energy with promising results. FBT therapists have specific training to deliver this programme in the community. You may find FBT trained therapists by doing the appropriate online searches and we advise doing your own research on this therapy first.
Addiction Clinics: For those willing to consider anorexia as a form of addiction, 12-step or similar programmes might be helpful for adults. Psychological strengthening is a lengthy and potentially expensive undertaking. Not all people with anorexia get access to this kind of help. Most available short-term therapy for anorexia has little option other than to focus on symptoms such as eating and low weight.
Problems that arise during recovery
Recovery is harder than staying ill for all the reasons which we have listed earlier. By reading recovery journals you will get a better idea of what kind of problems crop up. Example Emma Woolf: An Apple a Day. A recovering person needs to deal with unhelpful comments which can derail them: You look well. It’s nice to see you tucking in to a healthy meal. You were far too thin before…. Recovering anorexics experience predictable emotional changes against which they and their carers could be forewarned. Re-feeding releases a flood of emotions which have been blocked by starvation. The recovering anorexic may not feel happier for quite some time; they are angry, confused and overwhelmed by emotional experiences which they are unable to describe or manage. It is like being in the middle of a hurricane. Now I am fat and I have got all these awful feelings as well.
An eating disorder specialist can train carers to talk to their loved ones in helpful ways, train sufferers how to deal with comments and help them stay motivated. This approach installs beliefs that current difficulties will, if mastered, bring better benefits than returning to active anorexia.
Sometimes anorexia evolves into another eating disorder such as orthorexia, bulimia nervosa or compulsive overeating. It is easier for a trained psychotherapist to treat overeating disorders which feel like a failure of control. Orthorexia is less accessible to therapy because it is not viewed as a problem unless it has serious effects on life and relationships with other people. It is a form of eating that helps a person with coping issues be in control by avoiding food groups like carbs or animal products. Orthorexic behaviour can become obsessive. They say that these foods make them ill or that they have a mission to save the planet. Research is clear: although many people with eating disorders claim to have food allergy or IBS, they probably do not. I am allergic to wheat because it makes me bloated.
Anorexia in men
Men get anorexia too. It is not as common as in females and it is a myth that only homosexual men males get anorexia. The incidence of anorexia among men who are homosexual or who have gender dysphoria is as high as in women. This may be because insecurity and perceptual distortions are as common among gay men as in women in general. Myths about who gets anorexia prevents many men from asking for help. In keeping this section brief, I will make some observations about anorexia in males Male-onset anorexia generally occurs older than in females with a usual risk of obesity before the illness.The illness is often expressed differently at the beginning. Females are likely to start with dieting and men more likely to develop an excessive and obsessive interest in exercise or sport where dietary restraint sets in later The three subgroups of male anorexia are early onset (pre-teen) typical onset (teen) and adult onset. All three groups share features of obsession and perfectionism and low self-esteem. Most “normal” males are concerned with increased muscle definition and avoidance of flab even though they do not wish to achieve an exact weight or iconic clothes size such as the “perfect 8”. There is a social penalty for me in being thin. The motivation which dominates male anorexics’ motives for self-induced starvation may be an obsession with gaining muscle and losing fat; males aspire to the lean conditioned streamlined shape of the athlete, such as a cyclist or gymnast. In addition, eating disorders are very common among males who participate in competitive sport such as body building and athletics. Eating disorders are common among men who need to keep their body weight low, in gymnastics, and horse racing for example. Most professional athletes have a nutrition coach who may give unguarded advice about staying away from certain foods; this may trigger the onset of anorexia. Younger pre-pubertal anorexic males often have a history of anxiety or being teased for having female qualities. Boys do not gain weight in puberty as females do and research among pre-teen male anorexics suggest two common precipitants of anorexia, the first, fear of becoming fat. The second, participation in sport. Most young males with anorexic behaviour have an early history of anxiety and self-consciousness. Adult male anorexics have the same underlying “control with life / self-worth” issues as females. They show determination and eventually develop an obsession to cope with the stresses of life – e.g. divorce, or increased job responsibility through dieting and obsessive exercise. They may develop the conviction that their anorexic behaviour will improve their appearance or slow down the ageing process which reinforces their behaviour. Anorexia in men is marginally more likely to evolve into bulimic forms in which control is undermined by binge eating and the adoption of dangerous weight control practices such as purging. Restricting males show a gradual decline in their reproductive capacity as the illness progresses, rather than the on-or-off of female reproduction. It is common for romantic partnerships to disintegrate due to the strain of the illness but this is never enough to help someone change. The features and resistance to treatment in a male are the same as with a female with the added complication that men find it harder and more shameful to talk about having issues in the first place.
Anorexia in children
Anorexia exists in children as young as 7 and children as young as 5 express fears of becoming fat. Doctors find it hard to identify anorexia at these early ages in children who might just express their fear of eating as having tummy pains. Children with anorexia need to access treatment very urgently because they have less body fat than adults and are therefore more at risk of medical emergencies and failure to grow. There is another eating disorder which occurs in even more children than have anorexia. This is called ARFID, Avoidant and Restrictive Feeding and Eating Disorders. Is the child so picky that they cannot thrive and grow? Do they have other emotional issues which makes them unable to eat? Children with Arfid need to be taken to their GP in the first instance because only a GP can check their health status and see if they need professional help. Arfid in children can be associated with anxiety disorders and with autism. Children do not always grow out of their picky eating habits. If the picky eating is just a bad habit then it can be helpful to introduce a child to small new tastes and textures in pea size bites and rewarding them for their efforts.
Anorexia will continue to show up in people of all ages and there is no good evidence that prevention programmes work. Many schools offer eating disorder prevention programmes to adolescents. Some are deemed iatrogenic (creating harm). Anti-dieting messages may help to modify the attractiveness of dieting in the short term but there is no evidence of long-term impact on behaviour. Programmes to teach healthy eating are known to make vulnerable students over anxious about fat and carbohydrate which can trigger an eating disorder. Given the concerns about obesity, this is a no-win problem. Programmes which teach emotional resilience and self-worth may confer benefits. We do not know if they will divert a vulnerable person from the anorexic way of life. The good news is that anorexia is no longer a hidden issue. The internet is a good source of information for sufferers and carers. There are many more dedicated treatments and there are many more therapies that are available for helping someone feel better about themselves. There are also more dedicated, passionate eating disorder specialists whose research efforts will hopefully bear fruit in the future.