I watched helplessly as my tube-fed daughter insisted she would ‘never eat again’

Her obsession with ‘healthy’ eating and baggy clothes should have rung alarm bells about anorexia, says one mother

“I don’t want potatoes with my dinner.” That was how it started. The previous night, chips were rejected. I soon realised my 14 year-old daughter was declining every carbohydrate from every meal. 
“I’m getting healthy for the holiday” Lily shrugged. She wasn’t overweight, but this didn’t set any alarm. Now I realise it should have. 
Lily, naturally shy and a keen swimmer, was looking forward to going to Dubai with her father and younger brother for the Easter break. Two years before I had split with my ex-husband, it had been acrimonious but the children had weathered the family break-up relatively unscathed. 
Or so I’d thought.
In fact, I’m ashamed to admit it took another mother to tell me after inviting me for coffee one morning, that “the girls are really worried about Lily” before I knew there was a problem. For three months by then, my beloved child had been concealing her weight loss under baggy clothes. 
I suddenly realised the avoidance of carbs and constant tiredness was more sinister than normal teenage angst. At school Lily wasn’t eating a thing, the other mum said. Every lunch hour at her smart, private girls’ school was spent in the gym. 
I was mortified I hadn’t picked up on anything. She would sit down for dinner and still eat food, but it turned out nothing had passed her lips for the rest of the day.
At home that evening I confronted Lily, explaining her friends’ concern. She admitted that a group of girls had started dieting ahead of the summer. Most had quit, yet she’d been able to carry on and had enjoyed seeing the results. I sensed it was making her feel good, like doing well in something. At that time, neither of us named this behaviour as an eating disorder.
But it certainly was, as confirmed by the GP I marched her to that same week. Lily was immediately referred to CAMHS (child and adolescent mental health services).  
It’s not responsible to include Lily’s weight in the press in case other sufferers use it as a benchmark to aim for, but I can say that she was so worryingly thin that I was advised to immediately pull her out of school to make sure she didn’t exercise. 
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Physically exerting herself, we were warned, could lead to a heart attack. As shocking as those words were to hear, it didn’t deter Lily. Anorexics are single-minded. While I gave up my work as a reflexologist to monitor her at home, I still had to collect my son from primary school, being a single mum then. I later learnt that when I was out twice daily doing that, Lily secretly ran up and down the four flights of stairs in our west London home. We were advised that keeping Lily in her home environment was better than admitting her to an eating disorders ward, where she might learn new harmful habits from her peers. 
Over the next year, during the twice weekly CAMHS family counselling sessions, I discovered that over-exercising was Lily’s chosen method of weight loss. She was severely restricting calories and sometimes purging too. I learnt how she always felt “bigger” than other girls, despite being average-sized. 
In hindsight, I feel the advice given was too focused on getting Lily to eat, without enough enquiry into why she wasn’t, and her underlying mental health issues. 
With anorexia the focus is on food, and yet it’s so much more than food. It’s a very serious mental illness. There’s no one reason a child develops an eating disorder, I couldn’t just blame our divorce, social media, or pressures to look a certain way. It’s usually a perfect storm of factors, which can include a desire for control over life and then become cemented by a sense of competition. But it’s hugely complex and requires professional treatment at the earliest possible stage.
There were weekly weigh-ins but at the time I had no idea she was hiding 2p coins  in her pockets, or “water loading” (consuming vast amounts just before using the scales). Classic tricks. 
Once a 14-year-old girl who’d been developing into a woman, now Lily was just skin and bones. The top of her arms were as thin as her wrists, her knees were wider than her thighs. She seemed painfully fragile and constantly cold. 
Meal times were hideous. Even a glass of orange juice placed in front of Lily could make her so angry she would claw her forehead with her nails. She compared me asking her to drink that to her demanding that I climb into a bed of worms. 
There was begging, bargaining and many, many tears from both of us for months while I tried to feed her up. I’d make chicken meatballs, hiding cheese in the middle and frying in oil to add calories. 
She refused high-calorie supplements like Ensure, so I’d plead with her to try full-fat yogurt. The issue wasn’t the taste or appearance of food, but that she knew the exact number of calories in it. In everything.
Forcing someone to eat is very, very hard. I’d try distractions, brightly promising “the sooner you eat, the sooner we can do something fun”. Or I would negotiate: “you didn’t eat all your breakfast, so whatever’s in this meal won’t make up for it.”
But it wasn’t working. While Lily had returned to school, I was having to drive her there in the morning, take her home for lunch, and then collect her again at pick up to avoid her walking and attempting to carry extra weights in her rucksack. Her eating disorder dominated every hour, yet her weight fluctuated by only teeny degrees. I couldn’t handle it anymore. She was so ill, so thin. Friends would say well-meaning but unhelpful things like “it’s just a phase” and I often felt incredibly isolated.
After a year of CAMHS we decided to pay for a private clinic in Birmingham. Costing £5,000 a week this caused a huge row with my ex but I was desperate. Once hospitalised there, Lily was fed by tube for five months. I drove there several times a week and watched helplessly as she insisted she was “never going to eat or drink again”.
I know I’m fortunate in that we could somehow afford it, but it was utterly heart wrenching.
The synthetic calories used in tube-feeding bloated Lily, and she had to be several kilos above her target weight to be discharged. This caused her significant distress, as she was heavier than she’d ever been and hated herself for it.
She was already planning how to lose the weight as I drove her home in October 2015, jiggling her legs in the car all the way to burn calories. After a month, she made an attempt to take her life, I think as a cry for help. She told me what she had done and we went to A&E which I believe was the aim – I think she felt safer in hospital. However the general ward she was admitted to wasn’t a long-term measure. She needed somewhere more specialist.
We were then fortunate to get her into a large NHS psychiatric hospital which turned out to be a crucial part of her recovery. She was there for five months, coming home for dinner and sleep, while her school supported her to take her GCSEs. She was eventually discharged after she had regained enough weight. It’s been a long, painful struggle but she’s managing well, and was able to get into a Russell group university.
She’s 24 now, I’m 54, and my heart aches for any parents going through this. There are parent support groups out there, so please do look up what’s available in your area. And remember eating disorders are treatable. Lily is keen to work in mental health one day, using her own experience to help others. 
Sometimes I look back and wonder whether I was too involved in her recovery. So many young people have mental health issues these days and their parents keep working. Did I do too much? Would she have learnt to care for herself sooner if I’d taken a step back? You never know.
I want other parents to know that with the right support, eating disorders can be beaten. Lily and I are very close now and meal times are not stressful. To some degree she may battle internally for life, but she made it through. As did I. 
As told to Susanna Galton
Eva Musby is the author of Anorexia and other Eating Disorders – How to help your child eat well and be well. “Often parents hesitate to ‘make a fuss’, scared of being heavy-handed even when they suspect the illness is there,” says Musby. “They hope the problem will sort itself out without intervention, and while that can happen, nobody can predict if your child will be in that ‘lucky’ category. And it could take many miserable years.”
“Without treatment, some people get a little better – but don’t fully recover. The risks are just too high. It’s best to start treatment as soon as possible and the first step is going to your GP.”
First of all, a child or adolescent losing weight, or not gaining weight is never OK (even if classed as “overweight”). Notice also if your child is eating very slowly, fastidiously, using small plates, small spoons. They could also be questioning quantities and ingredients, cutting out major food groups or fasting “for health”. They may become obsessed with cooking for others. Also look out for commenting on body shape – theirs and others’, exercising compulsively, and low mood and irritability.
At first, they secretly cut out lunch in school. Then say they’ve eaten with friends, so they don’t need dinner with us. They get passionate about “healthy” eating and exercise. Parents yo-yo between worry and reassurance. We’re relieved they happily tucked into pizza last night. Later, we learn the reason they allowed themselves pizza is because they skipped lunch.
Thinning hair, cold hands, sore tummy, constipation, and “fur” (downy hair) on the face can all indicate that the body is reacting to malnourishment. 
Musby’s book is recommended by the UK’s leading eating disorders charity BEAT, she also has a website anorexiafamily.com for parents of children and teenagers.
You can contact Beat, the UK’s eating disorder charity, on 0808 801 0677 or beateatingdisorders.org.uk
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