The reality of coping with anorexia

My teen has anorexia. And parenting, I have discovered, is not a linear relationship between the effort expended and results achieved. Unlike wonderful Sarah Shackleton’s son, my daughter was neurotypical. My life did permit those idealised camping trips with friends, jolly Sunday lunches, discussions about whether she should be a dancer or a professor of chemistry. I was living the dream, baby. Until her full-blown eating disorder — anorexia — moved in and took over all our lives.

Did it come out of the blue? No, not exactly. She had told me she was occasionally skipping lunch several months before. As a clinical psychologist myself, I knew it wasn’t something that I should simply hope would go away, that it had to be taken seriously. So I found her a therapist. She started going once a week.

‘What is all this teenage trouble about? She’s a dream!’

At that point nothing looked that serious. She is a beautiful girl and still looked well. Her work at school was good. She loved playing the guitar and excelled at basketball. She had a group of great friends and loved walking in the hills and valleys where we live in Northern England. Just before Covid hit, I had caught myself thinking, ‘Huh, she is 15! What is all this teenage trouble about? She’s a dream!’

A new version of our daughter

Fast forward seven months to February 2021. I am in bed. My husband has done the early shift which means getting up at 6.45am to have her breakfast ready for 7.20am. It is now 8am. I hear the wood pigeon coo, a sound I associate with childhood. No, it is not the wood pigeon. It is her, sobbing as she crunches down the gravel path to the road. Then I hear the incident escalate as her choking sob becomes an angry, scorching scowl; the soundtrack of her losing her shit with my wearied husband because he will have a) given her one piece more of apple with her bran flakes  than “he was supposed to”; or b) requested she lend her copy of a text book to a younger brother who has lost his or c) left her for two seconds with her bowl of cereal to pour coffee into his cup. Live, breathe or be at your peril, husband! You are in the presence of the M.D.! The acronym stands for Mewing Dragon, the name we give her when we desperately need humour to put some distance between ourselves and the terrorising horror she becomes at her worst.

He has put his foot in it. He won’t have meant to. He will feel terrible about it. He will also feel resentful and angry that she is so tyrannisingly upset – it is over 1cm of apple after all.  She dreamt the night before last that a wolf ripped open her belly with its huge teeth and jaws. There is no wolf, but we do have a puppy, who is wearing a white plastic Cone of Shame round its neck to stop it scratching at a wound from barbed wire when we were out walking. As we watched a movie the night before, the puppy had stood, dejected, staring at her from my husband’s lap. She started hyperventilating, whimpering, ‘It’s gonna bite me!’ The puppy had to be put out of the room.

Understanding anorexia — the wolf inside her mind

But it is not the puppy which has it in for her. It is the angry wolf inside her mind, the one whose talons have clawed vents in the flesh of her calves and forearms and forehead. This wolf starts attacking her when I or my husband have got it wrong. ‘That is too much yoghourt on my porridge!” Out of the woods comes the growling wolf if I need to take a call or visit the toilet just before she has psyched herself up to eat her carefully measured portion of dinner. Or if Dad says he forgot to buy spinach and we have dared to have run out of it.

The reasons for the freakouts are so paltry, they curdle my heart in resentment and hate. But the distress of the mine I have detonated is real enough. I know this because the boiling feeling inside her becomes high-pitched screaming I have to block my ears from if I’m lucky and headbanging walls or scraping the flesh off her calves if I’m not.

After several incredibly tender days of liquid weeping, her most recent attacks have become scabbed scrapes of congealed pain. They will, after many weeks, eventually disappear under newly grown skin.

What mealtimes are like with anorexia

These violent moments of psychotic intensity punctuate an otherwise normal day of family life. She goes to school. She comes back, does her home work, endlessly shoots her netball into the hoop, plays the guitar. We negotiate her dinner of sweet potato, spinach and lentils warily. I am grateful it passes without incident. This is because we have been assiduous in serving exactly two spoons of sweet potato and not a gram more. I have ensured I sat and talked to her about her most recent basketball match with all my attention on her and the game. Her two younger brothers sit and eat in silence. They have learnt there is no point trying to pull any attention onto themselves at mealtimes. Gone are the rolling, easy conversations about what happened in our days; the boys’ victories in football go unrecounted. The geography master’s foibles forgotten. We are all, after 10 months of this rigmarole, battle-worn. We remain battle-ready.

After a family movie (Big, the boys will watch it too), she and I go out into the garden and shoot more netball hoops together. The sun is sinking over the Dales. I have seen nine patients back-to-back on Zoom since I awoke to the non-pigeon coo at 8am this morning. I have taken crackers and salad to her school, chatting diligently to distract her while she eats. At one point my phone rings – a patient in trouble. My attention wanders for maybe 30 seconds as I reply asking if we can speak later; she starts to panic. Her breaths come so fast I worry she will suffocate. I muffle my irritation at the coercive bind I am held in and take a deep breath.

‘Yes I understand it is hard for you when I have to respond to a patient. I am sorry.” I don’t let my attention wander again. I drive away from her screaming at the top of my voice: ‘HATE HATE HATE’. [It helps].

The challenges of bedtime with an anorexic child

Now it is 10.30pm. I have spent my entire evening servicing her needs because that way I keep the peace. I haven’t done a single thing for myself except brush my teeth, go to the loo, drink a cup of coffee and eat a bagel since I woke up this morning. I say, ‘Do you think you can go to bed on your own tonight?’ [I do not want to have to put her to bed. I am finished]. She starts to distress, whimpering that I have shattered her peace, rendered her hour-long netball session pointless. ‘Why do you have to be so cruel?’ she cries, piteously.

I feel mutinous. I don’t reply. I don’t move towards her. She leaves my room where the episode of Friends we usually watch to calm her down is already playing. I am relieved to see the back of her. My relief is short-lived. I can hear her whimper turn to a wounded cry then to angry screams when I don’t come. (I would happily stab her through the heart at this point. I cannot do more. I just can’t). My rebelliousness against being in harness produces a showdown. An hour later I am cradling her twitching form, bandaging her wrists, singing to her like she is a baby, desperate for her to come back to me. Eventually she looks up. “Please don’t sing any more songs, mummy. Can you put me to bed now?”

Boring and pointless

I am internally both relieved – she has come back to us – and furious. Part of me is bristling at the emotional coercion of it all and wants to scream at her: “Of course I am happy to put you to bed or I wouldn’t be here, but I cannot pretend to you that I wouldn’t prefer not to have to put you, at 15 years old, to bed every night. Or to have spent all my waking hours when I was not working either preparing food you will eat, taking the food to you at school, talking to you while you eat it, or preparing your smoothie for tomorrow’s breakfast and still find myself servicing your psychosis at 11.30pm at night! This is not what I signed up for. This is a shit way to live. It is utterly unrelenting. And above all, caring about how many spoonfuls of porridge you eat is so fucking boring and pointless!”

Do you recognise this experience?

If you are still reading this I will be surprised because it isn’t exactly fun. Either you have a child with an eating disorder and you are feeling that my words are articulating experiences you have had and you are feeling a measure of relief to be reading them. Or you are a friend or a relative of someone you love who is going through it so reading this is an insight into comprehending what a shit show they are living in. In which case, thank you too for bothering to want to understand how grim it is for them and how lonely it can feel.  And now for the focus pull.

What we as parents have to understand about anorexia

I have put the microscope onto what it is like nursing a child with an eating disorder. Now I am going to pull focus for the macro view of what is happening to them and why caring for them is such a challenge. What I believe to be the case is the following: Their brain has done a manoeuvre which goes something like this: Now I am a teenager I feel anxious about stuff I didn’t have to think about before. Things like, Will I manage to get some qualifications and find a job? Will I find someone I want to share my life with? What if I don’t? Or more short-term anxieties perhaps take centre-stage, like, What is that boy I like doesn’t like me back? Or prefers that other girl? What if no-one thinks I’m pretty? What if I’m not pretty? What if I am not popular? How can I be more popular?

How to control the anxieties? Eat less

All these reasonable, understandable anxieties have gone into the Eating Disorder Anxiety Liquidator Machine with the promise they can be got rid of and they can, as long as you obey one simple rule: Eat Less. And so eating stuff becomes equated with fear because if you eat, you are going against the Machine and the Machine is your Anxiety Liquidator so you can’t go against the Machine. But then you start getting depressed because you are starving your brain and your parents notice. Or maybe they only noticed when you started getting really thin. Or when you ate nothing but a glass of Diet Coke and an undressed salad at the restaurant when you usually scoff a pepperoni pizza and they found that weird. So they got you to the GP who diagnosed you with an Eating Disorder and passed you on to CAMHS whose scary nutritionist put you on a Meal Plan and now that scary nutritionist is the brains and your parents are the muscle and the muscle says: ‘Eat six times per day, every 2.5 hours’.

But eating is fear because fear is food. Eating means living, so living is unwelcome. So what you know is Food is Fear and You Want To Die. Rather like my wood pigeon’s cooing, what should be nice and homely and safe is rendered its opposite. Nasty, scary, horrifying.

What to do when you child is scared of food

So that is what is going on in your child. Meanwhile, as the parent you are faced with a dilemma. Your child is terrified by food. Food means life. Feeding the child means making them do the equivalent of eating six plates of wriggling scorpions a day. Now you can be told by your child — and the professionals at Child and Adolescent Mental Health Services (CAMHS) who are helping you — that your child is frightened of food and you can know it intellectually. You can see the fear on their face. But instead of feeling protective, mostly you feel irritation. The problem is this: normally when someone you love is feeling fear, your own amygdala (the part of your mammalian brain responsible for generating the emotion of fear) muffles its own fear response and triggers oxytocin which is the neurotransmitter responsible for cranking into life behaviours all parents can identify with — the inner lioness who is determined to protect our baby no matter the cost.

This is why perfectly normal women are able to lift cars off their squashed child when under normal circumstances they would never be able to lift such a weight. Therefore, in order for your amygdala to send the signal to crank up the pathway “Care!”, you — the parent — must first identify with what they are scared of. You need to feel their fear instantaneously, subconsciously, split-second speedily, but then react accordingly to solve their problem by getting rid of the object they are frightened by (lift the car/fight off the lion etc.).

How to understand anorexia

The problem with nursing someone with an eating disorder is that you don’t feel their fear because you know that what they are frightened of isn’t scary at all. After all, why is 1cm of apple such a big deal? Why does it matter if you have 2.5 spoonfuls of sweet potato rather than exactly two? Far from identifying in that subconscious, split-second way with their terror, what in fact you feel is a profound and narky irritation – why are they making such heavy weather of something so irrelevant?  It is six tiny sunflower seeds for god’s sake! etc. etc.

Have you ever enjoyed waving a spider in front of someone who is really scared of them? Exactly. You aren’t scared of the spider, so it can be quite fun to wind up the other person who is so terrified of something so tiny and innocuous. Interestingly, I have discovered that when you do that, you are behaving exactly like a psychopath! A psychopath is a person whose amygdala is very, very small so they don’t have much or any capacity to feel afraid. Therefore, when given the Emotional Recognition Test in gaol, a psychopath remarked that he wasn’t doing very well on “those faces” (faces showing fear) and went on to say, “I don’t know what you call that, but I know that is how people look just before I stab them”!

This seems funny to a neurotypical person – funny and horrifying, of course – because we can only shake our head in wonder at someone who cannot identify with another person’s fear. And yet, when confronted by your own eating-disordered child’s terror of three cherry tomatoes, the neurotypical parent is in effect behaving identically to the psychopath in the Emotion Recognition Test. The stabbed victim is abandoned to writhe in terror in the presence of someone who feels frankly irritated by their whimpers and cries. Feels familiar?  I refer you to my behaviour when she asked me to put her to bed at 10.30pm…

Advice for parents of anorexics?

Having given you the micro- and the macro- state of affairs, what have I to say to parents in the same boat? Be forgiving of yourself – you cannot identify with their fear, so you will detonate mine after mine after mine and it will be hellish. Take comfort in Churchill’s adage: “Success is not final. Failure is not fatal. It is the keeping-going that matters.”

Don’t be afraid to burst into tears on the phone to your friends. Ask your wider family to chip in for a regular treat – chocolates or a meal out – so you can escape, or binge on the chocolate after your daughter has freaked out. Remember you are loved. Above all, take all the help you can get for your child and yourself (family therapy is a godsend) and cultivate this earworm: “This too shall pass”.

Are you worried about an eating disorder with a loved one?

See the NHS site for how to help someone with an eating disorder.

Get advice from CAMHS on eating disorders.