How does an eating disorder affect you and your child?

Last updated on January 26th, 2024

Whatā€™s going on in the mind of someone with an eating disorder? And whatā€™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 ā€˜Anorexia and other eating disorders ā€“ how to help your child eat well and be wellā€™. I want you to benefit from this information right away šŸ™‚


What itā€™s like for parents

Eating disorders turn our lives inside out and we often despair and question whether anyone understands us. I wonder if whatā€™s going on for you is anything like this:

  • Youā€™re terrified for your child, and you desperately need to know that there is hope, that your present struggles will pass, and that he will recover.
  • Youā€™re missing your kid ā€“ heā€™s hardly recognisable these days ā€“ and you dearly want him back.
  • Youā€™d do anything to make him well, yet youā€™re never sure youā€™re doing the right thing. You are searching high and low to know what can help him.
  • It breaks your heart to see your child unwell, miserable and hungry. Every fibre in your body wants to give him solace.
  • 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. Youā€™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.
  • Youā€™re scared of the next mealtime yet you want to be a rock for your child to lean on.
  • Youā€™re worn out from being a figure of hate, of being rejected or excluded. You miss being close to your child.
  • When you see ā€˜normalā€™ families, you canā€™t help feeling envious or resentful. You long for the closeness and harmony you used to take for granted.
  • Some of the people who are closest to you just donā€™t get it, and this leaves you feeling isolated. You yearn for supportive, kind people who are ready to hear what itā€™s like for you.
  • Perhaps you keep your cool by switching your feelings off. Or conversely, you feel youā€™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.
  • Money may be short, increasing your stress.
  • You have no time or energy for fun. Perhaps youā€™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 youā€™re suddenly full of hope.
  • Youā€™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. Youā€™ve been on an emotional rollercoaster for so long, youā€™d like to know for sure that youā€™re all safe now.
eating in spite of anorexia
  • Things are looking up. Youā€™ve found approaches that work and youā€™re making good progress. You trust that whatever happens, you can cope with it, and you have confidence that your child will recover. Youā€™re frequently filled with gratitude, a new appreciation of life, and compassion for all of us on this eating-disorder journey.

Whatā€™s going on in your childā€™s mind?

It would be wonderful if we could read minds, but most of us have to guess whatā€™s going on in our childā€™s head.[i] She may tell you she feels one thing but be feeling the opposite. She might not talk to you at all. Your guesses about whatā€™s going on with her might be coloured by your own irritable or judging feelings. The more you can get into your childā€™s mind, the more you can tackle the illness effectively and compassionately.

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

Iā€™ll concentrate on what your child may feel if sheā€™s malnourished and suffering from anorexia, as itā€™s the eating disorder I know best:

  • To her, food is bad in some way. Itā€™s revolting. Itā€™s dangerous. Itā€™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.

ā€œI 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.ā€[ii]

  • Her body is gross ā€“ sheā€™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 sheā€™s fat[iii], fatter than before breakfast. She may on the other hand see that sheā€™s too thin and think that this is unattractive, but she still feels the need to be thinner. (Note that some people with anorexia ā€“ especially young children ā€“ donā€™t have a drive to be thinner or lighter or donā€™t have body dysmorphia.[iv])
  • People tell her sheā€™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 donā€™t understand that the way she is just right for her. Sheā€™s certain sheā€™s not ill; sheā€™s just doing what she needs to do to feel OK, as itā€™s exciting or comforting.[v]
  • 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.

ā€œYou 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 didnā€™t.ā€

  • She feels that people who comment on her eating or her exercising simply donā€™t understand her. She cowers from peopleā€™s judgement and criticism. She wishes they would accept her for who she is.
  • It feels absolutely impossible to eat. She canā€™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 ā€˜gives inā€™ to a huge craving to eat, and then she gets in a trance and ends up eating ā€˜too muchā€™. (Objectively, it might indeed be lots, or it might be a tiny amount). 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 do. She feels horribly weak when she exercises, and on some level itā€™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. Sheā€™s different.
  • Her body hurts. She is cold.

ā€œI have haunting memories of a January school trip ā€“ walking around Alcatraz Island having eaten almost nothing all week, wrapped in four or five layers of clothing, utterly miserable, the coldest Iā€™ve ever been in my life.ā€ [vi]

  • She is constantly anxious, edgy, down. Self-imposed rules help to keep her mood in check. In her state of anxiety, itā€™s good to feel in control, knowing what foods to avoid, what exercise to take, what clothes to wear. 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 a drug you develop tolerance for, the rules only work for a while. To keep their anxiety-relieving effect, they need to be stepped up. She may not know where the rules came from, but now theyā€™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 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 her tummy, which already sticks out too much, will become huge, and that feels unbearable. Perhaps terrible harm will come to her family. She may not know what will happen, but her dread is high, and she must keep herself (and her family) safe.
  • 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. She then feels exuberant, euphoric. The voice is her buddy, a wonderful, loving, validating companion ā€“ which is more than can be said about all the people 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 at mealtimes, when they were alone and even when they were asleep. Whatever the suffererā€™s age, any small deviation from the voiceā€™s rules turn it into a terrifying bully. It tells her sheā€™s worthless, that sheā€™s a pig for eating a lettuce leaf, that her body looks revolting and that she has to atone for every morsel sheā€™s eaten.) The more stressed she is, the less she has the power to quieten or defy the eating-disorder voice.

ā€œThe 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.ā€[vii]

  • She may refer to a voice even when she knows it isnā€™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. Sheā€™s filled with shame, regret and anxiety. She doesnā€™t know what to do and she dreads the aftermath of each meal. Itā€™s better not to eat and to feel weak rather than to go through this torture.
  • If she breaks her rules and eats ā€˜too muchā€™ or exercises ā€˜too littleā€™, she will suffer the agony of having to compensate later. She dreads feelings of starvation and fatigue, so the rules make sense to her. (See an excellent account of these tortured reasonings here)
  • Sheā€™s hiding food and lying about eating out with friends and no one has a clue. Lying and cheating isnā€™t like her at all and sheā€™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 isnā€™t her. Her state of stress is so high, she canā€™t control herself. The guilt is horrible. Itā€™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, sheā€™s sure of it. Who will help her? Who is capable? Who is willing? She is so alone.
  • Sheā€™s managed to keep up appearances in school. Her friends and teachers have no idea that sheā€™s in trouble. Itā€™s exhausting to keep up the pretence, and when sheā€™s back home she withdraws into herself. Yet school provides some welcome relief from the constant thoughts about food.
  • Her parents lecture her about the need to eat. She kind of knows theyā€™re right, and yet somehow it doesnā€™t apply to her. Sometimes she feels so unwell, or sheā€™s so upset about how sheā€™s missing out on life, that she wants to cooperate with treatment. But when it comes to eating, the terror returns, and she canā€™t pick up her fork.
  • She yearns for love and support.

ā€œI feel unloved but I don't want people to hug me. I want to be hugged and told everythingā€™s going to be okay, but if anyone touches me I'll kick off.ā€[viii]

  • She thinks about food all the time. In the middle of the terrible stress sheā€™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. Itā€™s a bittersweet pleasure to see people eating, and sheā€™s proud of herself for remaining ā€˜strongā€™ and not even licking the spoon.
  • The grown-ups are no use. When she shouts or chucks food in the bin, they give up and say they canā€™t make her eat. They will not rescue her. They donā€™t know how to rescue her. They are not capable. She is alone. She is terrified.
  • Sheā€™s angry that old friends arenā€™t sticking by her any more. Sheā€™s cross that people judge her. Some accuse her of being self-centred. They have no idea.
  • She feels helpless, hopeless and ashamed because believes one of the many myths about eating disorders.

ā€œMy daughter said, ā€˜Mom, why am I doing this? Is it really because I don't want to grow up?ā€™ I said to her, ā€˜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.ā€™ 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.ā€[ix]

  • She feels guilty and ashamed about everything. She cannot bear the sadness and worry sheā€™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 canā€™t. She is trapped.
  • Life is unbearable. She hates herself. She is full of shame, believes she doesnā€™t belong, doesnā€™t have a rightful place in this world. She is a burden ā€“ a horrible, lazy, greedy person who harms those who used to love her. Now they hate her. Every mealtime is unbearable. If she were not alive, she would be in peace.
  • Hurting herself or others sometimes provides temporary relief from anxiety, shame and guilt. Anger gives her a boost too: it sweeps away her doubts and helps her keep away from food.
  • When someone does try to get through to her she pushes them away. Sheā€™s not worthy of care. And if sheā€™s nasty enough, theyā€™ll give up on her and she can 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. Itā€™s fun but itā€™s also desperately sad. Can nobody help her?
  • People tell her sheā€™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 canā€™t feel anything, and doesnā€™t care about anything.

What itā€™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 donā€™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 ā€“ she had to avoid food. Now, she tells her voice that she has no choice ā€“ 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:

ā€œShe carried me on her shoulders when it seemed anorexia would drown me.ā€[x]

  • She feels better than she did a week ago, a month ago, a year ago. Things that once scared her are now OK. Itā€™s OK to be the shape she is, and eating is good. She doesnā€™t want to go back to the bad old days. Sheā€™s willing to participate now, to learn how to keep herself safe so that this doesnā€™t happen again. Sheā€™s careful not to miss meals, not to let her weight drop.
  • Itā€™s a little scary when the old feelings return, maybe when sheā€™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.
  • Sheā€™s proud of what sheā€™s achieved. Explorers and mountaineers have nothing on her when it comes to courage. Sheā€™s also filled with gratitude for all the kindness and support she has received from many people along the journey.
  • Sheā€™s bored of talking about eating disorders. Itā€™s not her any more. Itā€™s over. Sheā€™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 thereā€™s still much to learn about the biology of eating disorders. For now hereā€™s a model that helps us parents be effective.

fight flight freeze - eating disorder

It seems that an eating disorder puts individuals in a near-constant state of anxiety, with extra spikes of terror at mealtimes. A living systemā€™s priority is safety. When it detects a threat it jumps into one of several possible safety modes, summarised as ā€˜fight, flight or freezeā€™. The nervous system is going, ā€˜Weā€™re not safe. Avoid! Attack! And if we canā€™t, then shut down, go blank!ā€™ You have probably seen a lot of fight and flight around meals. And when your warnings and threats go unheard, when you simply canā€™t get through to your child, when they look blank and disconnected, that might well be a sign of a ā€˜frozenā€™ or shut-down state.

We donā€™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 Iā€™m sitting at my desk in complete safety. Itā€™s important for us to accept that for our children, whatever alarms them is alarming. Itā€™s their reality. Theyā€™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, ā€˜Itā€™s only food, canā€™t you see you need it?ā€™, 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. Itā€™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)[xi] 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 ā€“ 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 childā€™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.

 rewire the brain - anorexia - eating disorder

Think of tracks in the snow. If youā€™ve ever gone skiing, youā€™ll know that if a trace has been laid, thatā€™s where your skis will go. When we support our child to eat or to refrain from purging, itā€™s like a skier going into unmarked snow. New tracks are formed. At first they are shallow, and if there are deeper grooves nearby, thatā€™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 childā€™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 itā€™s like to be ā€˜hangryā€™. And you might have noticed how dull colleagues become while theyā€™re on a weight-loss diet. In the 1940s, the effects of starvation were recorded in the now famous Minnesota Semi-Starvation Study.[xii] After a few weeks on a seriously reduced diet, the men in the experiment:

  • became obsessed with food; itā€™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 donā€™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 weā€™re not feeding ourselves regularly, our bodyā€™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.[xiii] This is why many of your childā€™s physical and mental symptoms will pass with nutritional rehabilitation.

Additional effects of malnourishment for those with an eating disorder

The men in the experiment didnā€™t have an eating disorder. They chose to starve, but they hated it and as soon as the study was over, they rushed to eat (and they didnā€™t follow that with purging). People with a vulnerability to an eating disorder respond differently to scarcity:[xiv]

  •   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. Itā€™s probable that with any eating disorder, for most of the time, people are awfully hungry and longing to eat. With anorexia, ā€˜Iā€™m not hungryā€™ 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 ā€˜mental hungerā€™, though, which those with anorexia try so much to ignore: the constant preoccupation with food, which seems to be the brainā€™s way to get people to eat.[xvi]

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.


* Go to: Table of contents *

* Next: Chapter 3 The parentā€™s part in diagnosis *

And here are the resources you might most appreciate right now:

Notes


[1] Lots more on what it feels like from Tabitha Farrar in tabithafarrar.com and her book ā€˜Rehabilitate, rewire, recover!ā€™ amzn.to/2JpH4cf

[2] Some experts report that people with anorexia donā€™t get any hunger signals from their brain. Iā€™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

[3] The delusion that makes you see your body as huge when itā€™s thin is called body dysmorphia. Most, but not all, anorexics suffer from this, and it seems to me that itā€™s worse after meals and during times of higher stress.

[4] Ravin, S., ā€˜Defeating the Monster: Helping Little Girls Overcome Anorexia Nervosaā€™, http://www.blog.drsarahravin.com/eating-disorders/defeating-the-monster-helping-little-girls-overcome-anorexia-nervosa/

[5] Not recognising that one is ill ā€“ and therefore not wanting treatment ā€“ is referred to as anosognosia. Another term commonly used in the field of anorexia is ā€˜ego-syntonic illnessā€™, meaning that it is in harmony with the patientā€™s sense of self. In other words, people tend to like it or feel better for it.

[6] From ā€˜Amyā€™

[7] From ā€˜hmā€™

[8] From a girl with anorexia, posting on my website.

[9] From a parent on the Around the Dinner Table forum.

[10] Mayaā€™s tribute to her mother, at the All in the Mind Mental Health Awards, BBC Radio 4 (10 June 2014)

[11] Some of you will have heard me talk about the limbic system (which includes the amygdala) in relation to fight or flight, of the ā€˜triuneā€™ brain model and the ā€˜polyvagal theoryā€™. It turns out that these topics suffer from a blend of good science and over-simplified pop-psychology.

[12] For a fascinating first-hand account: youtu.be/hcjdPE1nDQg Also in Give Food a Chance by Julie Oā€™Toole (https://amzn.to/2CivYS6). Also Todd Tucker, The great starvation experiment (https://amzn.to/2UCK6wE). Also a detailed article: ā€˜They starved so that others be better fed: remembering Ancel Keys and the Minnesota Experimentā€™ in The Journal of Nutrition (June 2005) vol. 135, no. 6, pp. 1347ā€“52,  jn.nutrition.org/content/135/6/1347.full

[13] Two books for more on these mechanisms: Carrie Arnold in ā€˜Decoding Anorexiaā€™ (https://amzn.to/3m02BM6) and Dr Jennifer Gaudiani in ā€˜Sick enoughā€™ (https://amzn.to/3AKDWQb)

[14] Guisinger, S., ā€˜Adapted to Flee Famine: Adding an Evolutionary Perspective on Anorexia Nervosaā€™. http://www.adaptedtofamine.com/wp-content/uploads/2015/01/guisinger-an-pr-2003.pdf

[15] Read about the serotonin/starvation cycle in Carrie Arnoldā€™s book Decoding Anorexia (http://amzn.to/10Y2Una).

[16] Lots more from Tabitha Farrar in tabithafarrar.com and her book ā€˜Rehabilitate, rewire, recover!ā€™ amzn.to/2JpH4cf


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28 Replies to “How does an eating disorder affect you and your child?”

  1. I feel pretty useless to help my daughter. When she was younger I thought she would outgrow her issues and didn't see the seriousness. Now she is 19 going on 20 and has moved as far away from us as possible to attend University. When Covid hit she needed to move back but after a few good months her friends started to leave our town and she began filling her time more and more frantically with activity. Her weight went down. She refused to eat with us. Our health care providers where overmatched and she managed to manipulate us all…with threats and lies. Anything to not eat. She convinced us that her home was the problem and so were we and that she would do better in university. We tried to use our economic leverage to agree to continue financing university if she would be in more regular contact about how she was doing. I tried to explain that we couldn't sit idly by while she killed herself. At one point I sobbed….and couldn't stop. My Daughter has never even seen her old Dad cry and rather than compassion this triggered in her an impulse to flee, which she did but she had no where to go so returned. Her mom took time off work and staid home with her to ensure she was eating but she was only pretending. When she returned to University we heard nothing from her, she wont call and answers in monosyllables when we do manage to get her. She tells us she has help there and needs to be away from us to recover. She uses the words anger and hatred to describe her feelings towards her mother and I at at times. In her first two weeks of COVID isolation she was admitted to hospital with very low blood pressure and hypothermia. We only found out because she was worried about the hefty ambulance bill. It may be that she is angry that we threaten her with our withdrawl of economic support and she seems to be doing everything possible to become self sufficient so that we no longer even have that tenuous tie. It seems useless to try and talk to her to correct some of her conspiracy theories as I only seem to make things worse. When she was 13-16 I was her rock. Now I seem like I have no mojo at all. She claims to have a good Psychiatrist and a Nutritionist who weighs her but won't tell her as it is a trigger. Apparently so are we. She claims she can't talk to us and that we threaten her recovery. I have no idea how to bridge the enormous gap that is between us. I worry that she will die while we are held on the outside looking in. My wife may take some time off and move across our country to gain some proximity but we have no idea how to really help. I don't even now where to begin.

    1. Greg, this is such a distressing situation indeed. Most probably she rejects you and your wife, and blames you for making things worse, in the same way as most of our younger kids do — the eating disorder seems to create a state of miserable isolation and anger, and of course it wants to push any help away as eating is so very scary. I've put some suggestions on this type of situation at the end of my chapter 12, if you have my book. It's pretty common for parents to refuse to fund a lifestyle of starvation, as you have tried to do. You also have a right to give therapists and university info about what you see, and to voice your concerns, even if they are not allowed to tell YOU how she is. I should think you could tell the university she is in danger and must come home. Meanwhile, learn everything you can about supporting meals at home. You might, thanks to Covid, be able to chose a therapist by telecare that supports you better to do that.
      If you can't get her home, it is very tricky and I don't have many answers.
      Your main strengths will be to get super-well informed, plus the skills to be both loving and persistent.
      Get plenty of emotional support for yourself and give importance to what will sustain you, so that you keep having the strength to be there for her. All my good wishes. There is always hope. Eva

    2. Greg I hear you and understand everything you say. This is a club no parent ever would want to join its devastating. I know your pain and have been dealing with everything you mention for the last three years.
      Our daughters dietician and psychologist suggest she moves out of home! For her benefit. She would not survive this after many inpatient stays she is still attending University yet cannot even eat enough to gain any weight. We are blamed for caring and triggering all her anxiety. I too am at an end. You donā€™t threaten her recovery, you are her only real consistent chance.

  2. Hi
    My daughter's father died when she was 5 – her whole world fell apart she had extreme separation anxiety when ever I took her to school – I begged for help as even at a young age she stopped eating properly and I kept finding her food hidden. Fast forward a year or two later with no help she then started comfort eating. When she threw her little brother aged 3 down the stairs (lucky I caught him) a night was enough and demanded help through our gp .
    Comfort eating continued even though she was under can be for grief therapy.
    By the time she got to 13 she went to bed one day and didn't get up for weeks. She started losing weight but this continued. Can be didn't help – pills and more pills dished out. Once she was too old for Can be wow adult services are worse. At 21 she went into an awful NHS clinic which didn't help.
    She is now 24 and doesn't want help She is a bag of bones suffers from low potasium – her attitude is awful eats everything and throws it up has body dysmorphia and addicted to constipation tablets.
    I've ended up with fibromyalgia and on antidepressants.
    I'm stumped – I don't know what to do – she has told me if I get her sectioned she will commit suicide and I know she means it.
    I've tried everything – damn this illness.

    1. Damn this illness, indeed. You have both been suffering something awful. I am really sorry for what you are going through even now.
      It may be she can be sectioned and treated in a place that has an excellent suicide-watch system, though you'd need to be satisfied it really is good. I know of units for under-18s where the nursing support is intense for that very reason.
      So you're stuck, and no doubt very low on hope. And yet there always is hope, as we know from individual people's stories. Even from some who, like your daughter, seemed to be so severe, and have a history of poor treatment.
      A good place to understand the treatment of adults is http://tabithafarrar.com. Also be aware that the NICE guideline for eating disorders has been updated, and some aspects may help you. So far I've only written about the update with respect to the treatment of under 18s (https://anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69). I wish you hope and courage, and much self-kindness so that you can live the best life possible with the cards in your hands.

  3. Dear Vicky, maybe it will help you to know that what you describe is really normal in this situation. And on top of that it's often really hard when our children return home after discharge from hospital – transitions are very unsettling for them (and for us, as we have to find ways of caring for them).
    Her suffering will be very genuine, and yours too. These are very difficult times, until you get the hang of what to do.
    It's going to get a lot better, but first it sounds like you need a little more help from the clinicians and family (so ask for it) and from kind people who know what it's like (on this website you'll find link to online forums, and I also do individual support by video call).
    And maybe it will help you to get some clarity on what you can do for her that will work and help this really tough period pass – for instance it's likely that at this stage, she really doesn't need counselling (so she's "right" to resist it) but needs you to help her eat and gain weight even when her thoughts tell her it's unbearable. So I hope you'll get lots of good info from this site, or my book or videos.
    Let me know how you get on. Meanwhile I wish you lots of good things, as I do to all parents who long to see their kid back.

  4. Hi

    My 13 year old daughter has anorexia she was a impatient for three and a half weeks. She is at home but her moods are so awful she calls me names swears at me and says all she feels is pain and doesnt want to be here anymore. She refused to speak to her cpn nurse and counselling is for weak people I'm. not sure how much more I can take I crave for my old happy go lucky daughter back.

  5. Our daughter was very briefly anorexic when she was 12, but before she became dangerously underweight she agreed to a regular eating plan that we came up with (3 meals and 3 snacks). Her anorexic thoughts lingered, slowly becoming stronger in recent months as puberty finally kicked in at 16, and now anorexia is back with a vengeance. Am feeling numb, terrified and despairing; so glad to read the section on What it's like for parents. Glad I found your website, and have now ordered your book. Thank you!

    1. Dear Maria, you did really well to ward off the worst when she was 12, requiring 3 meals and 3 snacks! I can well imagine the awfulness of it now for you. I dearly hope my book will help you, as this is so much why I wrote it. I'll be thinking of you and sending warm wishes across the airwaves.
      Eva

  6. At my wits end. We are dealing with this for 3 years. My daughter is 24, hasn't had a period for 3 years. Eating ok and taking supplements. Around 7 stone for all of these 3 years, should be about 8 1/2. Seeing a therapist for 3 years. I am wondering if body weight has to be up at healthier level before the brain recovers or is this possible at this weight? bloods all ok except estrogen levels.

    1. Desperate Mother, this does sound horribly tense and I wish you and your daughter lots of good things to come. You'd like to know if her brain could heal while she's underweight? From everything I've learned, the answer is no. The recovery process is to regain weight in order for body (including brain) to recover. [UPDATE: this weight gain will probably have to be generous, i.e. not just the bare minimum needed for physical functioning. More and more therapists agree on this, and loads of parents and recovered people observing what worked, but many therapists, on the other hand, argue there's no research to back up this claim, and are scared that bringing someone's weight up to higher than the bare minimum will stress out the person so much they will restrict more. They don't have research to back this up, and the parents' work using family approaches shows the opposite.]

      In the process of eating more/differently there is also exposure and desensitisation work going on (Chapter 9 of my book), which leads to brain rewiring and more recovery. Check out my post on this age group and see if it helps you work out what to change.

  7. Dear Eva,
    Hello- my 11 year old has just started to eat voluntarily after a year or more of slow refeeding after prolonged weight loss for a year. Her feet have grown 2 sizes and she suddenly lost 6 baby teeth.
    I'm concerned about everything, her untrusting mood, her personality is still very different. I also worry that she isn't growing in height and she has lost all her muscles and fitness.
    She is on olanzapine and floroxatine and I wonder how they contribute.
    Do you have any thoughts or experience of the ways of the healing process for younger children?
    Thank you.

    1. Dear Mariam
      I don't have any clever answers for you, I'm afraid. Some thoughts:

      • Does she need more weight gain? (Chapter 6 of my book) Otherwise she might not grow much, and it would be normal for her mood to still be low.
      • If her feet have grown, maybe it's a sign she will soon grow in height, if she is eating enough and at a good weight. So it might be about being patient as different bits grow at different rates. I don't know about teeth. I do know that at the beginning fat distribution isn't even over the body and that it adjusts with time, but that's not quite what you asked. Her growth may be rapid once it starts (some catching up) – we were told this could happen with my daughter and it did.
      • Muscles and fitness: perhaps you mean she still looks skinny and she's weak? In which case, the weight gain needs to continue. You say the refeeding was slow – that's better than no refeeding but maybe her needs are growing faster than the calories you're putting in?
      • I am pretty ignorant about psych drugs (except that they don't cure anorexia, so hopefully your daughter is taking them only to help with mood?). I hope the psychiatrist is happy to discuss this with you, as my understanding is that drugs for youngsters should constantly be reviewed, adjusted, reduced.
      • Mood, personality: this can be very slow, Mariam. It doesn't tend to happen before the weight is good, plus time for brain healing, and for new habits and engaging with normal, fun life. The fact she's started to eat voluntarily is a hopeful sign that things are going to shift, and when they do you might find she's in a virtuous cycle and everyone's happier faster. I am guessing you've been having a very hard time, you've had lots to worry about, and I want to confirm, based on many many parents' experiences and on research, that there's every reason to trust your girl will be happy and carefree again.
      • I hope you're getting good professional support, because if so they should be able to give you far more precise guidance than I am doing here. Your questions are really valid, so ask for a special meeting to discuss all this?
  8. Thank you Katie, your feelings are those of my daughter. She is coming home from University today at our request and I am scared. She is a very intelligent girl and I hope I can "chip away" at this disease that has taken over my daughter. We call it a parasite. I now understand about my usual daughter and the anorexic daughter, almost as if they are two different people and how it is pure fear to eat. I am hoping that i can return to this site in a few months and say things are improving.

    1. Sending you warm wishes. Your daughter will no doubt be scared of having to eat with you but I bet it's also an huge relief for her to come home instead of struggling on her own in university.

  9. I'm sorry about all the pain you're all going through, Shaz. You're new to this hospital and I hope you find ways of getting the communication you need.

  10. My Daughter has been at Red Cross for 2 Weeks tomorrow and it feels like years. We did see her on Sat for the first time in a week as I mentioned to you. I hate dealing with a Government Hospital as they really don't care. I phone to ask about my daughter and the Psychatrist says she will phone me tomorrow!! I just wanted to know if she is ok and if she has put on weight.

  11. I'm glad you reached out – this can be a lonely place in the middle of the night. You know you have that love for your daughter somewhere in your heart, but as you were writing, you were overwhelmed with fear, like you want to hit out and get yourself some peace and hope some way or another? I see you commented elsewhere some hours later so I'll respond there now.

  12. Help I am beginning to hate my beautiful girl as all I see is fucking anorexia raising its ugly head. It's been here for too long and I see no end !

  13. Hi my son is 14 and in a clinic here in aust when I ring him he does not want to talk what do I do? He is 6 hrs away and when we visit is so vacant please how am I supposed to feel and get though this…?

    1. Oh, this is so hard, and also so common. Worse for you because of the 6 hrs, I imagine.
      It is also not for ever, in the experience of so many parents, me included.
      Check Chapter 14 which talks about this really common rejection of parents and may help you understand what's going on for your son and help you not take it AT ALL personally, and also help you tap into the hope that you will get a loving relationship back:

      As to how YOU get through this: I offer ways to take care of our own emotional wellbeing in Chapter 13 with the main principles and in Chapter 15, which includes emotional first aid as well as deeper transformation.

      Hope this gives you some relief for now?
      Take care
      Eva

  14. Hi Eva I'm a dad trying to understand in order to support my daughter ,wife and family. Just a brief read through of notes has given comfort thank youThanks CJ

  15. Hi Eva,
    I have been in contact with you before. My daughter is physically fine and is the picture of health, but sadly is riddled with anorexic thoughts which means she still has weight to gain. I am sure you can just imagine what this means for all of us! You emailed me a PDF document of your book so that I could highlight parts particularly relevant to me, but on upgrading my iPad to ios 7, lost EVERYTHING#%^^*%. Would you be so kind as to email me the PDF again. I would be so appreciative as I constantly go back to this as my point of reference when I feel lost as to how to deal with certain issues. When is your book hitting the shelves as I need it by my side?
    Thank you so much.

    1. I've emailed you. I'll be glad to help in any way I can.
      For anyone else reading this, a general comment (which may not apply to you as I don't know the details): weight gain might not be the issue if she's already at the weight her body needs. It may take time for the brain to heal. She may need time and exposure to overcome fears, for new habits to bed in, for her to feel safe and loved, for normal life to resume, for her old self to return.

  16. Katie, I can see that you'd like people to really understand what this illness is like from the point of view of a sufferer. I've added some of your sentences as quotes in my manuscript (keeping your anonymity), as I think that will help readers to really 'get' it. If that's OK with you and your parents, then thank you, and otherwise I'll take them back out no problem.

    I recognise the difficulties you flag up about praise and have tweaked the manuscript here and in a later chapter (where I spend more time on the issue) to clarify. Thank you.

    I'm glad you're pointing your parents to this site, and do tell them everything you've written here. It's a sure bet that they really want to understand how best to help you.
    Lots of good wishes to you all
    Eva

    1. Thank you for including things I've said. I just want parents to be able to understand what their child is feeling. And to recognise what I feel is helpful/unhelpful. Thank you x

  17. Hi, my names Katie and I myself suffer with anorexia. I just read this to, I guess, understand how my parents and friends may be feeling. You're very right in the way you think, i will definitely forward this post to my parents. The only thing which i don't agree with is praise, when people say "well done" i just want to kill them, well done? I mean are they crazy. When people say "its all going to be okay" it resorts me to think of all the bad things that will happen. When I'm having a meal i just want everyone to pretend like everythings normal. And just talk normally. Making me eat or talking about me and what I'm eating just angers me. I don't want to focus on the calories, i want to focus on something else to distract me. When I'm eating i think about what I'm eating and what will happen, anyone who says "you wont get fat" makes me feel like they're lying. I don't believe a word anyone says. I cant stand it when people stare at me whilst Im eating it makes me feel guilty and upset and angry. After I've eaten, it tends to be a lot worse, i get very guilty and worked up, after dinner, i need to do something to distract me, like TV or movies. After mealtimes, if my parents don't let me do what i want i get angry because i want the control and I've just eaten LOADS so it makes me feel like im a failure and i need the distraction of the TV. People can give me facts about weight, calories, nutrition, it will just make me worse. My voice wants me to be ill, if ill means skinny then ill it is. Being ill and people noticing your disorder gives you a sense of achievement. Starving myself makes me feel like I've achieved something. Most of the time i feel unwanted or unloved and unworthy of anything. But when people tell me that i am worthy i just don't believe them. I don't know if there's a compromise for that. I feel unloved but i don't want people to hug me. I want to be hugged and told everythings going to be okay, but if anyone touches me I'll kick off. I feel worthless but when people tell me how good i am at singing or math i get angry and sad, angry because i feel like they're lying to me. Sad because i feel as if im failing myself and everyone else around me. A lot of the time its a lose lose situation. For me the praise needs to be kept to a very subtle minimum. But this article is great. I don't know i hope i can help people to understand what this disease is really like and how i really feel. Thank you x

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