How does an eating disorder affect you and your child?

What’s going on in the mind of someone with an eating disorder? And what’s it like for you, the parent? This chapter offers understanding and compassion for yourself and for your child.

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❤️

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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:

• You’re terrified for your child. You desperately need to know there’s hope, that your present struggles will pass, and that your child will recover.
• You’re missing your child. They’re hardly recognisable these days, and you dearly want them back.
• You’d do anything to make them well, yet you’re never sure you’re doing the right thing. You’re searching high and low for help.

• It breaks your heart to see your child unwell, miserable and hungry. Every fibre in your body wants to comfort them.
• You’re on duty 24/7. You’re exhausted, sleep-deprived, anxious, overwhelmed. Your body aches. You wish you could be at your best for your child.
• You want you could be more confident. You need to know that whatever happens, you’ll have done your very best.
• Your home has become a battleground. You’d love to find a way of keeping your cool.
• You may be in conflict – with your partner, with clinicians, with insurance providers. Doubts and disagreements leave you angry, resentful, and desperate for a supportive team.
• You’re scared of the next mealtime, yet you want to be a rock for your child to lean on.
• You’re worn down by your child’s hostility. You feel rejected and excluded. You miss being close to them.
• When you see ‘normal’ families, you can’t help feeling envious or resentful. You long for the closeness and harmony you once took for granted.
• You keep revisiting the past, wondering if you’re to blame – even after you learn that parents don’t cause eating disorders. You agonise over every decision, afraid it might hinder your child’s recovery. You sense that some relatives judge your parenting style. It’s weighing you down. You need to believe in your capabilities again.
• Some of the people closest to you just don’t get it, and that leaves you feeling isolated. You yearn for kind, supportive people who are ready to hear what it’s like for you.
• Maybe you keep your cool by switching off your feelings. Or maybe you’re about to explode with anger and resentment. You want to give up or run away. Your mind is flooded by unspeakable thoughts about your child. You’re so scared, frustrated or depleted that loving feelings are out of reach.
• If you have other children, you worry for them. They’re anxious about their sibling, the house has become a war zone, and they’re not getting much of your time or attention. You wonder how to protect them from developing an eating disorder too.
• Money may be short, increasing your stress.
• There’s no time or energy for fun. Perhaps you’ve left your job and miss it. Still, you want to keep anxiety or depression at bay so that you can support your child as fully as possible.
• Your feelings swing from deep lows to bliss: when your child shows a glimmer of progress, hope floods in.
• You’ve held it together through every crisis, and now that your child is doing well, you find yourself weeping without knowing why. You’ve been riding an emotional rollercoaster for so long! You want to be sure you’re all safe now.

• Things are looking up. You’ve found approaches that work, and you’re making good progress. You trust yourself to handle whatever comes, and you have confidence in your child’s recovery. You’re frequently filled with gratitude, a new appreciation of life, and compassion for everyone 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 happening in our child’s head. She may say she feels one thing but be feeling the opposite. She might not speak to you at all. And your guesses might be coloured by your own irritability and judgements. The more you can step into your child’s mind, the more effectively and compassionately you can respond to the illness.

Eating disorders generally bring on feelings of shame, self-loathing and despair. The accounts of recovered people offer insights into the contradictory feelings they experienced.

I’ll focus on what your child may be feeling 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. And yet, she also craves it – that’s confusing. There’s a constant tension of conflicting thoughts and emotions. Food thoughts occupy her day, and at night her dreams are filled with banquets and binges. She has no peace of mind and she does whatever she can calm herself momentarily – even if it comes at a cost.

“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 it. She can’t bear the look or feel of it. She wants it to be thinner, lighter. When she looks in the mirror, she genuinely sees herself as fat — fatter than before breakfast. At the same time, she may know she’s too thin and feel that it’s unattractive, yet still feel she needs 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 she needs help. This is a terrible threat to her peace of mind. If they take away her control over the rules and behaviours that help her cope, life will be unbearable. People don’t understand – this way of functioning is just right for her. She’s not ill; she’s simply doing what she needs to feel OK. It’s comforting. Sometimes it’s exciting, like a project to focus on.
• At times she wishes she could be like everyone else – able to eat without worry. But eating is forbidden or too stressful. The internal tug-of-war can be 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 misunderstood when people comment on her eating or exercising. She recoils from judgement and criticism. She wishes people would accept her for who she is.
• Eating feels absolutely impossible. She can’t do it. People who insist that she eats are torturing her. When she does eat, she wants to gag, and her stomach hurts for ages. But when she manages to refuse a meal, she’s flooded with calm, satisfaction, reassurance and relief. Increasingly, hunger feels right. It’s peaceful. Yet it can also be miserable, making her feel empty and undeserving.
• On some level, she wishes someone would make her eat, would take the decisions off her hands.
• At times (especially if she has the binge-purge type of anorexia) she ‘gives in’ to a powerful craving to eat, and enters a trance-like state, eating ‘too much’. (Objectively, it might be a large amount – or just a few bites). Afterwards, she’s overwhelmed by the compulsion to purge herself of the food or burn off the calories. Her guilt and shame are torturous.
• Her body needs to keep moving – it feels physiological (this is most evident with young children, while they’re malnourished).
• She exercises to counteract the calories she’s eaten, and to work off her guilt. She’s exhausted, but she keeps going. Rest isn’t allowed; it makes her anxious and fuels her self-hate. And yet, when someone stops her from exercising, it’s a relief. Still, it feels wrong, so she tries to feel better by secretly tensing her muscles.
• It would be so lovely to lie back on the sofa and relax. But that’s 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.”

• She’s constantly anxious, edgy, and low. Self-imposed rules help her feel in control of her mood: they prevent things from happening that could magnify her anxiety. So there are foods to avoid, exercises to complete, clothes to wear. The need to rest, sleep, satisfy her hunger or live well is nothing compared to the calm – or the sense of achievement — that comes from obeying the rules.
• Like a drug you build tolerance for, the rules only work for a while. To keep their anxiety-relieving effect, they must be intensified. She may not know where the rules came from, but now that they’re here, they keep multiplying and becoming more compelling. Yesterday she managed to exercise until midnight, so now that’s the new standard.
• If someone interferes with her rules, she’s distraught. She may have to compensate by denying herself something else. Otherwise something terrible might happen – something that feels worse than death. Perhaps her tummy, which already sticks out too much, will become huge, which is unbearable. Perhaps terrible harm will come to her family. She may not know what will happen, but her dread is intense, and she must keep herself – and and her family – safe.
• If she breaks her rules and eats ‘too much’ or exercises ‘too little’, she’ll suffer the agony of having to compensate later. She dreads the sensations of starvation and fatigue, so the rules make sense to her.
• 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 forbidden, she’ll be shot.
• She may hear a voice in her head, or visualise or feel an entity that makes demands of her. It showers her with love whenever she avoids eating, whenever her tummy feels empty. She then feels euphoric. The voice is her buddy, her loving, validating companion – unlike all the people who criticise and nag. But as the days pass, the voice makes ever-increasing demands. Appeasing it becomes a full-time job, creating unbearable anxiety. (I know of a couple of children younger than nine who were tormented by voices – at mealtimes, when alone, even in their sleep. Whatever the sufferer’s age, any deviation from a voice’s rules turns it into a terrifying bully. It tells her she’s worthless, that she’s a pig for eating a lettuce leaf, that her body looks revolting and that she must atone for every morsel she’s eaten.) The more stressed she is, the less she has the power to quieten or defy the eating disorder voice.

“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. (For some, it’s a welcome metaphor – a way to describe internal conflict. For others, even the suggestion of ‘a voice’, metaphorical or not, feels insulting.)
• 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, as if she’s 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 dreads the aftermath of every meal. It’s better not to eat, to feel weak, than to endure this torture.
• Her internal sensations may be heightened, with her nervous system interpreting an empty stomach as safe, and fullness as a threat:

“I have a heightened sense of my body’s cues. I have never been comfortable with the feeling of a full belly. While restricting, I soon discovered that the pangs of hunger I felt through restriction brought me a sense of calm. Later on, when my hunger signals had almost disappeared, I found that the peaceful nothingness of an empty belly helped me to feel calmer still.”

• She’s hiding food and lying about eating out with friends, and no one suspects a thing. Lying and cheating aren’t like her at all, and she’s ashamed – but this is an emergency. She has no choice. She has to protect herself. Cheating helps her follow her rules or restrict calories, but it also isolates her: she’s alone with her thoughts and feelings.
• She feels terrible about screaming at her parents, about her violent outbursts. If her friends or teachers knew how she behaved, she’d die of shame. This isn’t her. Her stress levels are so high she can’t control herself. The guilt is horrible. It’s awful to see her parents so hurt.
• When her parents shout at her and punish her for not eating, she loses hope. They hate her. She’s sure of it. Who will help her? Who is capable? Who is willing? She is utterly alone.
• She’s managed to keep up appearances at school. Her friends and teachers have no idea that she’s in trouble. It’s exhausting to maintain the façade, and once home, she withdraws. Yet school offers some relief from the constant thoughts about food.
• Her parents lecture her about the need to eat. She sort of knows they’re right, but somehow it doesn’t apply to her. Sometimes she feels so unwell, or so upset about missing out on life, that she wants to cooperate with treatment. But when it’s time to eat, the terror returns, and she can’t pick up her fork.
• 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 thinks about food all the time. Amid the stress, she can lose herself and find peace in cookbooks and lists of recipes. Cooking for everyone brings relief. It’s a bittersweet pleasure to see people eating, and she’s proud of herself for staying ‘strong’ and not even licking the spoon.
• The grown-ups are no use. When she shouts or bins food, they give up and say they can’t make her eat. They won’t rescue her. They don’t know. They’re not capable. She is alone. She is terrified.
• She’s angry that old friends aren’t sticking by her. She’s cross that people judge her. Some accuse her of being self-centred. They have no idea.
• She feels helpless, hopeless and ashamed because she believes some myths about eating disorders.

“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 can’t bear the sadness and worry she’s causing everybody. If she could stop it, she would. She’s scared her parents and siblings will give up on her and abandon her.
• People have told her that she could die if she continues like this. But eating feels even more dangerous. Even when she tries, she can’t. She is trapped.
• Life is unbearable. She hates herself. She’s ashamed, convinced she doesn’t belong, that she has no rightful place in the world. She is a burden – a horrible, lazy, greedy person who harms those who used to love her. Now they hate her. Every mealtime is unbearable. If she weren’t alive, she’d be at peace.
• Hurting herself or others sometimes brings temporary relief from anxiety, shame and guilt. Anger boosts her: it sweeps away doubts and helps her avoid food.
• When someone tries to reach her, she pushes them away. She’s not worthy of care. And if she’s nasty enough, they’ll give up on her and she can avoid eating.
• She knows she might be admitted to hospital, even tube-fed. The thought terrifies her, so she eats just enough to avoid this. Or she may long to be rescued, to receive guilt-free nourishment and rest. In that case, she eats even less at home.
• Therapists are a joke. You can lie to them and twist them around 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 they’d 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. She doesn’t care about anything.

What it’s like on the way to recovery

I’d like to think that once a person receives competent support from parents and professionals, some of the despair and isolation begins to lift. That there’s a growing sense of hope and trust. Your child might still fight you, but something inside her may be shifting.

• Eating is still awful – but it’s 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’re stronger than the eating disorder drive, stronger than the ‘voice’. They help her to cut through the conflicting arguments in her head. In the past, she had no choice – she had to avoid food. Now, she tells the voice 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. 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, and not to let her weight drop.

“I’m glad that dick has gone out of my head and I can enjoy Christmas this year, Mum”

• 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 has a life to live.

How the body interacts with thoughts and behaviours

Fight, flight, freeze

When our nervous system detects a threat, it jumps into one of several protective modes — commonly summarised as ‘fight, flight or freeze’. It signals, ‘We’re not safe. Avoid! Attack!’ You’ve likely seen plenty of fight-or-flight responses around meals. ‘Freeze’ is the shut-down, zoned-out, empty-eyed state your child may inhabit when fear is very high – when the nervous system deems that fight or flight won’t work. It makes sense that malnutrition should put the body on alert. We don’t yet know why an eating disorder leads to extra anxiety – why food, rest or a particular body shape come to feel like threats.

Many fears aren’t logical. I notice signs of alarm in my body when I imagine a snake or a bungee jump – yet I’m sitting safely at my desk. To become powerful helpers, let’s accept that for our children, whatever alarms them is alarming. It’s their reality. They’re not pretending.
When you feel like shouting, ‘It’s only food – can’t you see you need it?’ remind yourself: your child isn’t bad. They’re responding to a nervous system that interprets food, rest, and a full belly as a threat.

The brain is wired to prioritise safety. Our safety system (largely centred in the limbic area) takes over quickly, while the slower, rational brain is sidelined – effectively offline until the perceived threat remains.

The way out of fight, flight or freeze is not through rational talk. It’s through signals of safety – physical and verbal kindness, connection, and calm. That’s why, throughout this book, I’ll keep guiding you towards compassion – for yourself, and for your child.

Rewiring the brain

Ever since Pavlov rang bells for his dogs, scientists have studied how the mind becomes conditioned to respond to certain stimuli. Right now, your child’s brain is wired to react to food with anxiety. When he engages in ritual behaviours like calorie-counting or exercising, neurons fire along well-established pathways. Calming hormones are released, and he feels a sense of safety and reassurance. All this makes eating disorders hard to shift. The good news is that the brain can change. When someone engages in new behaviours, the brain forms new connections.

Think of deep tracks in the snow, or a well-worn path through tall grass. These are like the strong pathways the brain follows. They feel safe. Familiar. It takes effort and repetition to carve out new tracks, but over time, become the most natural route to follow. Likewise, the brain is capable of creating new pathways between neurons and strengthening synaptic connections. You may have heard the phrase, ‘neurons that fire together, wire together’. The same mechanism that locked your child into a fearful, unhelpful default mode is the one that will free her.

Malnourishment messes with the brain

Many of your child’s symptoms – including anxiety, depression, and irritability – are simply linked to disordered eating, malnourishment, or being underweight. Think of being ‘hangry’. Think of the low mood induced by a weight-loss diet or a long gap between meals. In the now famous Minnesota Semi-Starvation Study, men placed on a severely reduced diet:

• 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 withdrew from others

When the food supply is irregular or insufficient, the body shifts into energy-saving mode. The goal, it seems, is survival, not wellbeing. Even if the fridge is full, if we’re not feeding ourselves regularly, the body perceives scarcity. It senses a threat to life and activates the fight-flight-freeze response, cutting off access to rational and emotional intelligence. Odd beliefs or behaviours take hold. Non-essential functions shut down to conserve energy until the famine is over.

There’s another reason for some of the symptoms we see in our children. Brain scans of malnourished individuals show reduced grey matter and altered connections. Just as we expect someone with a stroke or dementia to function differently, it makes sense that our children can’t think or act the way they used to.

This is why we prioritise refeeding. As nourishment kicks in, you’ll see many of your child’s physical, cognitive and emotional symptoms begin to ease.

malnourishment plus an eating disorder

The Minnesota experiment shows the effects of malnutrition, but our children also have an eating disorder. This brings on additional reactions to food scarcity, most of which fade with nutrition:

• They often have anosognosia, a neurological condition that makes them unable to recognise the severity of their situation – or even that they have a problem at all.
• Not eating, and not resting, and having an empty stomach feel ‘right’. Restricting food brings a momentary sense of calm or even elation (something that has been linked to differences in serotonin regulation).
• Their sense of threat can spike post-meal, with unpleasant sensations, feelings and thoughts – like self-hate. They can experience the sensation of fullness as ‘feeling fat’.
• While they may ask for relief from their mental and physical suffering, any requirement to increase food or weight feels utterly wrong.
• Even if they are blessed with self-awareness and motivation, they go into fight, flight or freeze at mealtimes.
• When most of us lose weight through illness or dieting, our bodies drive us to restore weight and health. With an eating disorder, other mechanisms kick in – and the more starved someone is, the stronger the drive to restrict.
• Starvation can lead to lethargy – or, conversely, hyperactivity. Eating disorders often come with an exercise compulsion. Very young children can suffer from extreme restlessness, constantly on the move (and at their age, it’s not about counting calories).
• In the Minnesota experiment, the men were so driven to top up their tiny food rations that they had to chaperone each other during outings. Similarly, people with eating disorders may be hungry most of the time. Their ‘I’m not hungry’ protestations may really mean, ‘I’m ravenous, but I’m terrified of how I’ll feel if I eat.’ Even if they don’t have physical hunger cues, they probably have ‘mental hunger’ or ‘food noise’: the constant preoccupation with food, fascination with cookery shows, and vicarious pleasure of watching others eat – all signs of the body’s healthy drive to eat.
• Sometimes there’s a genuine lack of hunger, because hormones regulating appetite are disrupted. It’s also normal for a person to feel uncomfortably full after a tiny meal, because starvation slows the digestive system to conserve energy. People with anorexia want to stop eating as soon as they feel full. In contrast, during refeeding, the Minnesota men found their mental hunger drove them to eat generously, despite discomfort.
• The men gladly ate and gained weight in the refeeding phase. With an eating disorder, the early days or weeks are marked by fear and resistance.
• An eating disorder often comes with some body hate or body dysmorphia.
• The sense of threat and anxiety is intense. There’s a lot of self-hate, self-denial, and sometimes self-harm. Some sufferers are tormented by an internal voice that bullies them.

Take heart: you’re learning how to deal with the illness, and your child’s smiles will return.

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Where to next:

* Go to: Table of contents *

* Next: Chapter 3 The parent’s part in diagnosis *

And here are the resources you might most appreciate right now. I can also meet parents individually.

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