Last updated on October 6th, 2020
This is the whole of Chapter 2 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’. I want you to benefit from this information right away 🙂
What’s going on in the mind of someone with an eating disorder? And what’s it like for you the parent? The aim of this chapter is to lead the way to understanding and compassion for yourself and for your child.
What it’s like for parents
Eating disorders turn our lives inside out and we often despair and question whether anyone understands us. I wonder if what’s going on for you is anything like this:
- It breaks your heart to see your child unwell, miserable and hungry. Every fibre in your body wants to give him solace.
- Things are looking up. You’ve found approaches that work and you’re making good progress. You trust that whatever happens, you can cope with it, and you have confidence that your child will recover. You’re frequently filled with gratitude, a new appreciation of life, and compassion for all of us on this eating-disorder journey.
What’s going on in your child’s mind?
It would be wonderful if we could read minds, but most of us have to guess what’s going on in our child’s head. She may tell you she feels one thing but be feeling the opposite. She might not talk to you at all. Your guesses about what’s going on with her might be coloured by your own irritable or judging feelings. The more you can get into your child’s mind, the more you can tackle the illness effectively and compassionately.
Eating disorders generally bring on feelings of shame, worthlessness and despair. The accounts of people who have recovered offer insights into the contradictory feelings they experienced.
I’ll concentrate on what your child may feel if she’s malnourished and suffering from anorexia, as it’s the eating disorder I know best:
- To her, food is bad in some way. It’s revolting. It’s dangerous. It’s terrifying. It makes her feel sick. The confusing thing is that she also craves food, so there is the constant tension of conflicting thoughts and emotions. Thoughts of food occupy her every waking moment, and her dreams are full of banquets and binges. She has no peace of mind and she does what she can to calm herself momentarily, even if it comes at a price.
“I was obsessed with food, it was all I could think about, and even foods I didn't like tasted like heaven when I allowed myself to eat. The hunger is crippling; it makes you act really crazy.”
- Her body is gross – she’s sure of that. She cannot bear the look or feel of it. She wants it to be thinner, or lighter. When she looks in the mirror, she genuinely sees that she’s fat, fatter than before breakfast. She may on the other hand see that she’s too thin and think that this is unattractive, but she still feels the need to be thinner. (Note that some people with anorexia – especially young children – don’t have a drive to be thinner or lighter or don’t have body dysmorphia.)
- People tell her she’s in trouble and insist that she needs help. This is a terrible threat to her peace of mind. If they take away the rules and behaviours that help her cope, it will be unbearable. People don’t understand that the way she is just right for her. She’s certain she’s not ill; she’s just doing what she needs to do to feel OK, as it’s exciting or comforting. 
- At times she wishes she could be like everyone else, that she could eat without worry. But eating is forbidden or too stressful. Sometimes her internal tug of war is intense.
“You were all eating cake and I remember how it looked so delicious and I really wanted some. I felt so weak and so hungry and thirsty. I wanted it so very much, but at the same time I didn’t.”
- She feels that people who comment on her eating or her exercising simply don’t understand her. She cowers from people’s judgement and criticism. She wishes they would accept her for who she is.
- It feels absolutely impossible to eat. She can’t eat. People who insist that she eats are torturing her. When she does eat, she wants to gag, and her tummy hurts for ages. Calm, satisfaction, reassurance and relief flood over her when she manages to refuse a meal. Increasingly, hunger feels right. It is peaceful. But the hunger can also be miserable and it mirrors how empty and undeserving she feels.
- On some level she wishes someone would make her eat, would take the decisions off her.
- Exercising provides relief from the anxiety she feels from eating and is also something she must do. She feels horribly weak when she exercises, and on some level it’s a relief if someone insists that she relaxes. Not much of a relief, though, because she still has to surreptitiously tense her muscles.
- It would be so lovely to be able to lie back on the sofa and relax. But this is not for her. She’s different.
- Her body hurts. She is cold.
“I have haunting memories of a January school trip – walking around Alcatraz Island having eaten almost nothing all week, wrapped in four or five layers of clothing, utterly miserable, the coldest I’ve ever been in my life.”
- The illness is like having a terrorist hold a gun to her head. She’s terrified, but if she calls for help or does anything that the attacker has prohibited, she will be shot.
“The relationship with the eating-disorder voice can feel very much like an abusive relationship, complete with Stockholm syndrome and all, as the voice screams at you, belittles you, and you have to depend on its permission for your very survival. You cling to it and are terrified of it at the same time.”
- She may refer to a voice even when she knows it isn’t real. It can be a welcome metaphor that helps to explain her internal conflict to herself. On the other hand she might find insulting the suggestion that she hears a voice, metaphor or not.
- After a meal the full feeling in her tummy is unbearable. It hurts. It feels wrong. She may feel like kilos of fat have suddenly sprouted on her and that she has ballooned out. She blames herself, and to add to the stress, the voice, if she has one, is screaming at her. She’s filled with shame, regret and anxiety. She doesn’t know what to do and she dreads the aftermath of each meal. It’s better not to eat and to feel weak rather than to go through this torture.
- She’s hiding food and lying about eating out with friends and no one has a clue. Lying and cheating isn’t like her at all and she’s ashamed of it, but this is an emergency. She has no choice. She has to protect herself. Cheating helps her restrict her calories but it also means she is alone with her thoughts and feelings.
- She’s managed to keep up appearances in school. Her friends and teachers have no idea that she’s in trouble. It’s exhausting to keep up the pretence, and when she’s back home she withdraws into herself. Yet school provides some welcome relief from the constant thoughts about food.
- She yearns for love and support.
“I feel unloved but I don't want people to hug me. I want to be hugged and told everything’s going to be okay, but if anyone touches me I'll kick off.”
- She’s angry that old friends aren’t sticking by her any more. She’s cross that people judge her. Some accuse her of being self-centred. They have no idea.
“My daughter said, ‘Mom, why am I doing this? Is it really because I don't want to grow up?’ I said to her, ‘Sweetheart, this isn't something you are choosing to do. It's not your fault. I just found some new information about this that says it's genetic. I'm so sorry that we passed this on to you. It's not your fault, it's not our fault.’ Honestly, I can still see the understanding and relief that washed over her face. It was at that point that we really began to move forward with refeeding.”
- She feels guilty and ashamed about everything. She cannot bear the sadness and worry she’s causing everybody. If she could stop it, she would. She is scared that parents and siblings will give up on her and abandon her.
- People have told her that if she continues like this, she may die. But eating feels even more dangerous, and even when she tries to eat, she can’t. She is trapped.
- She knows that she might be tube-fed or admitted to hospital. The thought terrifies her, so she eats just enough to avoid this. Or she may be relieved at the prospect that, at last, she will be in the hands of some competent adults who know how to rescue her. In which case she eats even less at home.
- Therapists are a joke. You can lie to them and twist them round your little finger. It’s fun but it’s also desperately sad. Can nobody help her?
- People tell her she’s dangerously undernourished. She wishes people would leave her alone. She is distraught because she is alone.
- Everything is a blank. Everything is so confusing. Her mind is numb. She can’t feel anything, and doesn’t care about anything.
What it’s like on the way to recovery
I would like to think that once sufferers get the competent support of their parents and of professionals, some of the despair and isolation is replaced by a sense of hope and feelings of trust. Your child might continue to fight you but things might be quite different internally.
- Eating is still awful but it is possible. She remembers that yesterday, it was bearable. Perhaps she can manage today as well.
- Her parents and carers know when she hides food, and they don’t give in when she refuses to eat. They are stronger than her eating-disorder drive, her eating-disorder voice. They help her to cut through the conflicting arguments going on in her head. In the past, she had no choice – she had to avoid food. Now, she tells her voice that she has no choice – she has to eat what her parents give her.
- However bad she gets, her parents understand her, they love her, they will never abandon her. They know what to do. They know how to help her. She will be rescued. There is hope. As one young woman said about her mother:
“She carried me on her shoulders when it seemed anorexia would drown me.”
- She feels better than she did a week ago, a month ago, a year ago. Things that once scared her are now OK. It’s OK to be the shape she is, and eating is good. She doesn’t want to go back to the bad old days. She’s willing to participate now, to learn how to keep herself safe so that this doesn’t happen again. She’s careful not to miss meals, not to let her weight drop.
- It’s a little scary when the old feelings return, maybe when she’s hungry or stressed. Will she ever be completely rid of this illness? But as time goes this happens less and less. Besides, she and her parents are now experts at nipping problems in the bud.
- She’s proud of what she’s achieved. Explorers and mountaineers have nothing on her when it comes to courage. She’s also filled with gratitude for all the kindness and support she has received from many people along the journey.
- She’s bored of talking about eating disorders. It’s not her any more. It’s over. She’s got a life to get on with.
How the body interacts with thoughts and behaviours
Fight, flight, freeze
Scientists are busy exploring the complexity of the brain, and there’s still much to learn about the biology of eating disorders. For now here’s a model that helps us parents be effective.
It seems that an eating disorder puts individuals in a near-constant state of anxiety, with extra spikes of terror at mealtimes. A living system’s priority is safety. When it detects a threat it jumps into one of several possible safety modes, summarised as ‘fight, flight or freeze’. The nervous system is going, ‘We’re not safe. Avoid! Attack! And if we can’t, then shut down, go blank!’ You have probably seen a lot of fight and flight around meals. And when your warnings and threats go unheard, when you simply can’t get through to your child, when they look blank and disconnected, that might well be a sign of a ‘frozen’ or shut-down state.
We don’t really know why with an eating disorder, food or rest or a particular body shape are perceived as threats. Many fears are not logical. I note signs of alarm in my body just thinking of a snake or of doing a bungee jump. Yet I’m sitting at my desk in complete safety. It’s important for us to accept that for our children, whatever alarms them is alarming. It’s their reality. They’re not pretending. When we accept that, rather than expecting them to be logical or rational, we become powerful helpers.
When you want to explode, ‘It’s only food, can’t you see you need it?’, imagine someone with very little vision. When they walk into your furniture and get bruised, do you berate them for being irrational? Do you tell them they ought to have seen your coffee table? No, you accept that their senses are not giving them the same information as you get. It’s the same with our children. Their nervous system is receiving information that food is a threat.
The brain is wired to prioritise safety. Why waste even a second considering our values, evaluating options or seeking perspective? So to put it crudely, our safety system (much of it in the limbic brain) takes over fast while the slower, rational brain functions are pretty much offline. We stay in this mode for as long as the sense of threat persists.
The route out of fight, flight or freeze is not rational talk. Instead we need to find ways of signalling to our nervous system that the threat is over. Generally that is done through physical and verbal kindness and connection. This is why in this book I will keep guiding you to use compassion – for yourself, and for your child.
Rewiring the brain
Ever since Pavlov rang bells for his dogs, scientists have studied how the mind is conditioned to react in certain ways to certain stimuli. Right now, your child’s brain is wired to react to food with anxiety. When your son or daughter engages in ritual behaviours like calorie-counting or exercising, neurons fire according to a well-established pattern, calming hormones are released, and the result is sense of safety and reassurance. All this makes eating disorders hard to shift. The good news is that when a person engages in new behaviours, the brain forms new connections.
Think of tracks in the snow. If you’ve ever gone skiing, you’ll know that if a trace has been laid, that’s where your skis will go. When we support our child to eat or to refrain from purging, it’s like a skier going into unmarked snow. New tracks are formed. At first they are shallow, and if there are deeper grooves nearby, that’s where the skis tend to go. But if we can get the skier to go over the new tracks again and again, these will eventually become the most natural route to follow.
For the brain, the equivalent of tracks in the snow is the creation of new pathways between neurons, the strengthening of synaptic connections. You may have heard that as neurons fire together, they wire together. The same mechanism that has locked your child in their fears is the mechanism that will free her.
Malnourishment messes up the brain
Many of your child’s symptoms, including their state of anxiety, depression, and irritability, are simply down to irregular, disordered eating, or to malnourishment and being underweight. You might know what it’s like to be ‘hangry’. And you might have noticed how dull colleagues become while they’re on a weight-loss diet. In the 1940s, the effects of starvation were recorded in the now famous Minnesota Semi-Starvation Study. After a few weeks on a seriously reduced diet, the men in the experiment:
- became obsessed with food; it’s all they thought or talked about
- often pored over cookery books, images and descriptions of food
- became irritable, egocentric and depressed
- lost their sense of humour and isolated themselves from others
When we don’t get the food we need at the times we need, the body activates a whole energy-saving system that only attends to our survival, not our wellbeing. Our fridge might be full, but if we’re not feeding ourselves regularly, our body’s perception is that we are in a period of scarcity. As it senses a threat to our life, it goes into fight-flight-freeze, which cuts off access to our rational and emotional intelligence. All non-essential functions are closed down to conserve energy until the famine is over.  This is why many of your child’s physical and mental symptoms will pass with nutritional rehabilitation.
Additional effects of malnourishment for those with an eating disorder
- An important difference is anosognosia, a neurological condition that makes an eating disorder so hard to treat. It makes people incapable of recognising that they have a problem or quite how serious it is. They fight nutrition because their current state feels right, and anything else feels awfully wrong. I imagine that, hidden away, there is always a healthy part that longs for wellbeing. Our children occasionally surprise us with motivation and rational thought. But undernourishment, with an eating disorder, tends to bring distorted, even delusional thinking.
- Malnourishment activates a state of threat. Normally, this focuses people on procuring food. With an eating disorder, tragically, undernourished people perceive food as terrifying. Even if they are blessed with some self-awareness and motivation, they go into fight, flight or freeze at mealtimes. Restricting food, on the other hand, temporarily brings a sense of calm or even elation to those with anorexia, something that has been linked to differences in serotonin regulation. 
- Many people experience weight loss through a diet or illness. Normally they regain weight because the body activates hunger and physiological mechanisms to restore weight and health. With an eating disorder, many of these mechanisms get overridden, to the extent that the more starved someone is, the more they are driven to restrict.
- Whereas starvation normally induces lethargy, eating disorders often come with a compulsion to exercise. Very young children are often afflicted by an extreme restlessness which drives them to move constantly (and at their age, it’s not that they are calculating calories).
- The men in the Minnesota experiment learned to chaperone each other when they went out, to fight their urge to go get some food. The drive to eat is huge. It’s probable that with any eating disorder, for most of the time, people are awfully hungry and longing to eat. With anorexia, ‘I’m not hungry’ protestations seem to sometimes be manipulation, and sometimes genuine. The appetite-fullness hormonal mechanisms do get disrupted. Also, people really can feel full after a tiny meal, because starvation has put the digestive system in energy-saving mode. There is still ‘mental hunger’, though, which those with anorexia try so much to ignore: the constant preoccupation with food, which seems to be the brain’s way to get people to eat.
- Normally, when you have been hungry, it feels great to finally have tucked into a big meal. With an eating disorder, when healthy hunger wins the battle against restriction, the aftermath is a cruel activation of the threat system. The person is overcome by unbearable thoughts and sensations, hence the drive to purge.
- The Minnesota men gladly ate and gained weight once the starvation phase ended. With an eating disorder there is often an intense fear of weight gain, as well as body dysmorphia: people truly see their body as grossly deformed. This glitch in the brain seems to be linked to irregular eating, as it usually gets sorted with nutritional rehabilitation. On the other hand, sufferers can continue to dislike their body for some time, even though they learn to tolerate the feeling.
- The sense of threat and anxiety seems particularly high with an eating disorder. There is a lot of self-hate, self-denial, sometimes self-harm. Some sufferers have an internal, bullying voice.
 Some experts report that people with anorexia don’t get any hunger signals from their brain. I’ve mostly come across ex-sufferers who recall extreme huger. This quote is from Tori Midoro, one of many people discussing a fascinating Ted Talk by Dr Laura Hill, titled Eating Disorders from the Inside Out. http://youtu.be/UEysOExcwrE
 The delusion that makes you see your body as huge when it’s thin is called body dysmorphia. Most, but not all, anorexics suffer from this, and it seems to me that it’s worse after meals and during times of higher stress.
 Ravin, S., ‘Defeating the Monster: Helping Little Girls Overcome Anorexia Nervosa’, http://www.blog.drsarahravin.com/eating-disorders/defeating-the-monster-helping-little-girls-overcome-anorexia-nervosa/
 Not recognising that one is ill – and therefore not wanting treatment – is referred to as anosognosia. Another term commonly used in the field of anorexia is ‘ego-syntonic illness’, meaning that it is in harmony with the patient’s sense of self. In other words, people tend to like it or feel better for it.
 From ‘Amy’, commenting on Carrie Arnold’s ED Bites blog: http://edbites.com/2013/08/the-trauma-of-having-an-eating-disorder/
 From ‘hm’, commenting on Carrie Arnold’s ED Bites blog: http://edbites.com/2013/08/the-trauma-of-having-an-eating-disorder/
 From a girl with anorexia, posting on my website.
 From a parent on the Around the Dinner Table forum.
 Maya’s tribute to her mother, at the All in the Mind Mental Health Awards, BBC Radio 4 (10 June 2014)
 Some of you will have heard me talk about the limbic system (which includes the amygdala) in relation to fight or flight, of the ‘triune’ brain model and the ‘polyvagal theory’. It turns out that these topics suffer from a blend of good science and over-simplified pop-psychology.
 For a fascinating first-hand account: youtu.be/hcjdPE1nDQg Also in Give Food a Chance by Julie O’Toole (https://amzn.to/2CivYS6). Also Todd Tucker, The great starvation experiment (https://amzn.to/2UCK6wE). Also a detailed article: ‘They starved so that others be better fed: remembering Ancel Keys and the Minnesota Experiment’ in The Journal of Nutrition (June 2005) vol. 135, no. 6, pp. 1347–52, jn.nutrition.org/content/135/6/1347.full
 Two books for more on these mechanisms: Carrie Arnold in ‘Decoding Anorexia’ (https://amzn.to/2G4XQKr) and Dr Jennifer Gaudiani in ‘Sick enough’ (https://amzn.to/2Xa7tPR)
 Guisinger, S., ‘Adapted to Flee Famine: Adding an Evolutionary Perspective on Anorexia Nervosa’. http://www.adaptedtofamine.com/wp-content/uploads/2015/01/guisinger-an-pr-2003.pdf