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.
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 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, and you desperately need to know that there is hope, that your present struggles will pass, and that she will recover.
- You’re missing your kid – she’s hardly recognisable these days – and you dearly want her back.
- You’d do anything to make her well, yet you’re never sure you’re doing the right thing. You are searching high and low to know what can help her.
- It breaks your heart to see your child unwell, miserable and hungry. Every fibre in your body wants to give her solace.
- You’re on duty 24 hours a day and you’re exhausted. Your body hurts. You wish you had more energy in order to do a good job of supporting your child.
- You wish you could be more confident. You want to know that whatever happens, you will 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 the clinicians who are caring for your child, or with insurance companies. Doubts and disagreements drive you crazy and fill you with anger and resentment. You yearn for a supportive team and a partner who is on the same page as you.
- You’re scared of the next mealtime yet you want to be a rock for your child to lean on.
- You’re worn out from being a figure of hate, of being rejected or exluded. You miss being close to your child.
- When you see ‘normal’ families, you can’t help feeling envious or resentful. You long for the closeness and harmony you used to take for granted.
- You keep wondering if you somehow made your child have an eating disorder (even though you know that’s buying into a myth) and if your everyday interactions are getting in the way of her recovery. You sense that some of your relatives blame your parenting style. This is weighing you down. You need to believe in your capabilities again.
- Some of the people who are closest to you just don’t get it, and this leaves you feeling isolated. You yearn for supportive, kind people who are ready to hear what it’s like for you.
- Perhaps you keep your cool by switching your feelings off. Or conversely, you feel you’re about to explode with anger and resentment. You want to give up or run away. Your head is full of unspeakable thoughts about your child. You are so scared, frustrated or depleted that you have no access to loving feelings.
- If you have other children, you’re worried for them. They are anxious about their brother or sister, their home has turned into a war zone and they’re not getting much of your time or attention. You might also want to protect them from developing an eating disorder, too.
- Money may be short.
- You have no time or energy for fun. Perhaps you’ve given up your job and you miss it. Yet you want to keep anxiety or depression at bay so that you can give your child the best possible support.
- You can go from feeling low to blissfully happy in an instant, because your child has shown a sign of progress and you’re suddenly full of hope.
- You’ve been hanging in there, coping all right, but now that the crisis has passed and your child is doing well, you find yourself weeping for no reason at all. You’ve been on an emotional rollercoaster for so long, you’d like to know for sure that you’re all safe now.
- Things are looking up. You’ve found approaches that work and you’re making good progress. You have the confidence that whatever happens, you can cope with it, and you also have reasons to hope that your child will be well again. 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 in fact 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 feelings, and as a result involve some element of irritation and judgement.
Eating disorders generally bring on feelings of shame, worthlessness and despair. The accounts of people who have recovered from anorexia offer insights into the contradictory feelings they experienced. It’s a little scary to realise quite how much anorexia messes with the brain, but it does help us to tackle the illness much more effectively and compassionately.
If your child has anorexia, she may be experiencing some of the following:
- 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 the anorexia away, she will die. They don’t understand that the way she is just right for her. As far as she’s concerned, she’s not ill; she’s just doing what she needs to do to feel OK, and sometimes anorexia feels 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.”
- 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.
- 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.
- At times (if she has the binge-purge type of anorexia) she has a huge craving to eat, and she ‘gives in’ to the desire. But then she eats ‘too much’. It may objectively be a tiny amount, or she may genuinely have eaten an abnormally large amount in one sitting. She then has an overwhelming compulsion to get rid of the food or burn the calories. Her guilt and shame are torture.
- Exercising provides relief from the anxiety she feels from eating and is also something she must 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.
- 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.”
- Rules help to keep her anxiety in check. Self-imposed rules like what foods to avoid, what exercise to take, what clothes to wear help her feel she is in control. The need to rest, to sleep, to satisfy her hunger and live well are nothing next to the sense of achievement or the relief she gets from obeying rules.
- Like an addictive drug, the rules only work for a while, and they need to be stepped up if they are to continue to relieve her anxiety. She may not know where the rules came from, but now they’re there, they keep multiplying and becoming ever more compelling. Yesterday she managed to exercise till midnight, so now that is the new standard.
- If someone interferes with her adherence to the rules, she is distraught, and she may have to compensate by denying herself something else. Otherwise something terrible may happen, something that feels worse than death. Perhaps she will balloon out in the space of a few minutes (her tummy, after a meal, feels balloon-like already). Perhaps terrible harm will come to her family. She may not know what will happen, but her dread is huge, and she must keep herself (and her family) safe.
- To her, anorexia may be 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.
- She may hear a voice in her head, or visualise or feel some kind of entity that makes demands of her. It showers her with love whenever she manages to avoid eating, whenever her tummy feels empty. At first she feels exuberant, euphoric. The voice is her buddy, a wonderful, loving, validating companion, which is more than can be said about her friends and parents who have started to 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 whose voices were absolutely real to them, and who terrified them not only around mealtimes but also whenever they were alone and even when they were asleep. Whatever the sufferer’s age, any small deviation from the voice’s rules turn 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 has to 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. 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 feels terrible about screaming at her parents, about her violent outbursts. If any of her friends or teachers in school knew how she behaves, she would die of shame. This isn’t her. The guilt is horrible, but she has no choice.
- 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’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 anxiety about food.
- Her parents lecture her about the need to eat. She kind of knows they’re right, and yet somehow it doesn’t seem like it applies to her. Sometimes she feels so unwell, or she’s so upset about how she’s missing out on life, that she decides she’s going to cooperate with treatment. But when it comes to eating, 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. In the middle of the terrible stress she’s dealing with, she can lose herself and find peace by going through cookbooks and making lists of recipes. Cooking for everyone brings relief as well. It’s a bittersweet pleasure to see people eating, while she remains ‘strong’ and resists even licking the spoon.
- The grown-ups are no use. When she shouts or chucks her food in the bin, they give up on trying to feed her. They will not rescue her. They don’t know how to rescue her. They are not capable. She is alone. She is terrified.
- 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.
- She feels helpless and hopeless because she’s bought into one of the many myths about the causes of 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 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.
- Life is unbearable. She hates herself. She is full of shame, believes she doesn’t belong, doesn’t have a rightful place in this world. She is a horrible, lazy, greedy person, and she harms everyone around her. Every mealtime is unbearable. She wants to die to find some peace.
- Hurting herself or others sometimes provides temporary relief from anxiety, shame and guilt. Anger sweeps away her doubts and helps her keep away from food.
- When someone does try to get through to her she pushes them away. She’s not worthy of care. And she needs to keep up the resistance to avoid eating.
- 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 loneliness 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 an eating disorder affects thoughts and behaviours
Malnourishment messes up the brain
Once someone, with or without an eating disorder, lacks the nutrients and fluids that humans need to function, there are physical reasons why their thinking becomes distorted and why they start behaving out of character. The brain is particularly badly affected by malnourishment, as it has a massive need for energy. The adult brain consumes roughly 500 calories a day.
People who are malnourished because of an eating disorder exhibit many behaviours and have many thought processes that are identical to those of people who are starving for other reasons. This came to light in a bold study done in the 1940s, called the 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
If your child has an eating disorder, you can probably recognise these symptoms. In fact, if you’ve ever been on a slimming diet, you may have experienced them yourself.
Additional effects of malnourishment for those with an eating disorder
The men in the experiment didn’t have an eating disorder. They chose to starve, but they hated it and as soon as the study was over, they chose to eat. People with a vulnerability to anorexia react differently when food becomes scarce or their body weight drops. Here are some of the differences.
- An important one is anosognosia, a neurological condition that makes people incapable of recognising that they have a problem or quite how serious it is. They have no motivation to change because the way they are feels right. Even if they do want change in order to get their old life back, they are driven to resist treatment.
- Restrictive anorexia makes eating a very distressing experience. Eating seems painful, scary, shameful, wrong, and truly dangerous. Restricting food, on the other hand, temporarily brings a sense of calm or even elation, something that has been linked to differences in serotonin regulation.
- Many people have times in their life during which they don’t eat enough and therefore lose weight, whether through diet or illness. But for someone with anorexia, a compelling drive to continue restricting food kicks in. Left untreated the drive quickly becomes stronger. In a matter of a week or two, a parent can go from a wait-and-see position to a sense of extreme urgency.
- Anorexia usually leads to a drive to over-exercise and to avoid rest.
- With the binge-purge type of anorexia, people can, at times, feel an overwhelming drive to eat, but they experience unbearable thoughts and sensations afterwards, which they relieve by purging.
- Someone with anorexia usually (but not always) feels driven to be thinner or lighter, and can be intensely fearful of becoming fatter or heavier.
- People with anorexia most often (but not always) have body dysmorphia – they truly see their body as grossly deformed, and if you contradict them, they don’t believe you.
- On an intellectual level people with anorexia can understand everything you or I know about food and health, but their thinking – when it comes to themselves and their own eating – is irrational and distorted. The brain is unable to function normally. Distorted – even delusional – thinking will continue until a healthy body weight has been reached, and even after that it may take a few weeks or months for the brain to heal completely.
- People with anorexia tend to have rigid, black-and-white thinking. They also come across as inflexible. They seem stuck in self-imposed rules or unable to see the bigger picture or deal with evolving situations. Experts refer to this as difficulty in set-shifting.
- People with anorexia may be plagued by terrible emotions, but they are often unable to step back and notice them, or they may be unwilling to talk about them.
- Anorexia makes people reject themselves: the repulsion towards food spills over into a repulsion towards the self, towards depression and self-hate. Some may feel the need to purge, deny or punish themselves. Self-harm, if it’s present (many patients don’t self-harm), seems to be linked to the anxiety that oppresses sufferers.
- Some children suffer from depression or anxiety disorders at the same time as anorexia. Co-morbid conditions, in some cases, developed first. But if they weren’t present before the onset of anorexia, they usually fade away as the person begins to eat well.
- The internal conflicts created by anorexia sometimes manifest themselves as an internal voice, which starts off as a friend and ally but soon becomes a bully.
- And of course, anorexia has severe effects on the sufferer’s physical health.
 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 a girl with anorexia, posting on my website.
 From a parent on the Around the Dinner Table forum.
 Julie O’Toole, in her excellent book Give Food a Chance (http://amzn.to/UCcXL3), gives an excellent description of the Minnesota Experiment conducted by Ancel Keys and colleagues, and its implications for our own semi-starving children. You can also read a detailed article: ‘They starved so that others be better fed: remembering Ancel Keys and the Minnesota Experiment’ in The Journal of Nutrition (1 June 2005) vol. 135, no. 6, pp. 1347–52. http://jn.nutrition.org/content/135/6/1347.full