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When Jo Kingsley’s daughter Alice, 14, began a campaign to ‘get healthy’, she had no idea it would lead to anorexia and hospitalisation. Five years on, they tell their story 


ALICE’S STORY:

The day 9/11 happened, I was an inpatient in an eating-disorder hospital and in the middle of my bed rest – the worst three weeks of my life. I remember Mum being stunned by the TV news flash, but I just didn’t register it. I couldn’t sit down and concentrate, all I could think about was how I could keep my body moving to work off calories. It wasn’t until remembrance day, a year later, that I realised what had happened. It was awful. I watched it on TV and couldn’t believe it. I was ashamed at how self-absorbed I’d been. I kept thinking, ‘God, Alice, how could you have been that far gone that you couldn’t even register such a tragedy?’


I’ve never understood what it was that triggered my problems. I had a happy childhood, a good circle of friends and a strong, loving family. Today, looking back at the photos before things started to go wrong, I hardly recognise the girl I used to be: on the one hand I can’t believe I lived with myself looking that big for so long; on the other hand, I can’t believe how simple my life was.


The first time I recalled something being wrong was when I was 11; a long-term boyfriend of my eldest sister, Beth, now 25, noticed me doing a funny toothbrush-tapping routine on the sink at bedtime. I don’t know how long it had been going on for, but I remember thinking, ‘If I don’t do this tapping thing then something bad will happen’.

Soon after that incident, my rigmaroles – as we call them – became more intrusive. I would spend hours on my homework, writing down a word, thinking it looked aggressive on the page and scribbling it out. I was ashamed and embarrassed. I’d always taken so much care over my work presentation; now it had rows of crossing out. Then I started becoming the last one to leave the classroom – because I kept tucking my chair in – and the last one to get changed after games. I existed in a little world where I thought that nobody would notice my strange behaviour, but of course they had. My obsessive routines came to a head one morning when Mum left me to get dressed. After 20 minutes I’d achieved nothing more than putting on my underwear, and I was stuck opening and closing the cupboard door. I remember that I couldn’t stop. I kept thinking, ‘Just get past this, Alice’; but the more I tried, the more frantic I became. I couldn’t put my tie on. I couldn’t do my buttons up. When Mum came in, I just erupted. I was frightened, and I realised then that something was very, very wrong.


We went to see the doctor who told me I had obsessive-compulsive disorder, or OCD. The realisation that there was a medical diagnosis to my problem – and that I wasn’t going crazy – put my feet back on the ground. It became easier for me to control my OCD and it took a back seat in my life. I was having fun again – going to Alton Towers, having sleepovers and digging into icecream with my friends, like any normal teenager. However, deep down inside, I knew that I was capable of slipping into a slight abnormality.


Despite my routine-based and very driven attitude to life, I never thought I’d go anorexic. But I did. I was just 14, when I started to think about food differently. I thought that if I was healthier, I’d be happier. People had always told me that as I got older, I would have to start to watch what I ate, so I thought I was doing what any normal 14 year old should be doing.


Fatty foods and dairy products were the first things that went, and, later, I began to cut out even more foods. Until then, I had always used my taste buds as decision makers, but now I recall looking at a dessert menu and shutting my brain off to my body, making myself have a coffee instead. I don’t remember feeling hungry; if anything, I felt more satisfied the less I ate. Not eating gave me a huge rush.


SPIRALLING OUT OF CONTROL


My periods stopped, but I didn’t even think about it. Finally, Mum took me back to my GP who confirmed that I had anorexia. When he explained the term, I couldn’t believe how wrong he’d got it. To me, everyone was making the most enormous fuss over nothing. I wasn’t thin enough, and I ate too much. I felt that if everyone just left me alone, I’d be fine.
Part of me became frightened that I’d be forced to gain weight and another part of me feared that people would begin to expect certain things from me; I was worried that if one day I did manage to eat a yoghurt, people would think I was bluffing.


These feelings of anxiety triggered a whole new set of criteria. I became tougher on myself, obsessively exercising and then justifying my movements, saying that I was checking the horses water troughs or that I had left something upstairs. But the real reason I kept on the move was because I needed to work off the food I had eaten. My thinking was, ‘I’ve eaten something today and I want to get rid of it.’ The next few months spiralled out of control. We saw the specialist in May but things were going down hill pretty fast, and our family holiday in France was a complete disaster. I found it difficult to complete my exercise routine. I couldn’t relax knowing I hadn’t done it, and I was arguing more with Mum and Jenny, now 24, over food. My birthday supper was the worst ever – I couldn’t eat any of my chocolate cake.


At the end of the holiday, Mum said I wouldn’t be going back to school. I was furious. Instead, I started appointments at the eating-disorder unit. The consultant told me I had lost more weight and took out a body mass index chart to explain how dangerous my situation was, but I refused to believe what he was saying. I felt enormous, and didn’t feel like I needed to be there. I was told that I needed to eat more simply to stop losing more weight.

When, on 4 July, I still hadn’t gained weight, I was admitted to hospital on a daily basis. I was terrified. Frantic. My only reward at the end of the week was a ‘well done’. What kind of reward was that? I didn’t even want to gain a kilo. Within six months, I’d gone from eating 300 calories a day to 4000. As the calories increased, so did my exercise routine. It became a lethal combination. I thought that my main fear was giving up the exercising, but I now realise that it was gaining weight.


To be shadowed by a nurse, confined to a bed and not allowed to exercise was torturous, but I had no option. I’d now lost sight of anything beyond my next meal. There was this constant pressure for me to be sitting down; but all I could think about was how I had to keep my body moving – to work off my last meal.

By early September, I was on bed rest 24/7. I will always remember sitting on that bed in the small room, with the door ajar and a nurse outside, thinking, ‘I want to die’. People kept saying it was for the best and that they were trying to support me, but I couldn’t see it. I felt like I was battling the whole world and everybody in it. My life was falling apart around me.

 

"I felt like I was battling the whole world and everybody in it.

 


ROAD TO RECOVERY


Mum gave me a world map that jolted back a memory that I’d once wanted to go off travelling. I realised that if I didn’t acknowledge my problem, I’d never get beyond hospitalisation. I discovered that I’d managed to stay relatively thin but I’d lost everything else in the process. I knew that I had to gain some weight and take more control of my life.

It’s been a bumpy road, but it feels like years have passed between then and now. I might not be able to cure my eating disorder, but I weigh myself regularly to keep it in check. There are times when I still want that lower-calorie yoghurt. But, realistically, I know that if I have messed up by the end of the week I will only have to eat more the next week.


I’m now 19, but feel like I’m 17. While my friends were learning about boys and doing normal teenage things, I was learning other stuff. I can’t wait to go off to university in September to catch up on what I missed out on and follow my dream of becoming a doctor. Strangely, even after all that has happened, I still question whether or not I really was anorexic. While I will never enjoy food, I know that I have to eat to live. Life is worth it.


JO’S STORY


Although I was with Alice in her unit when the disaster of 11 September was reported on the television, it wasn’t until a year later that she took it in. At the time, she was 14 and totally immersed in her world of exercise – to the point of jumping on the spot – and anorexia. Alice watched the repeat with complete disbelief as the horrors unfolded and said that she had never seen any of it before. It was a frightening revelation for both of us.
In 2000, Alice was the only one of my three girls left at home and I knew it was important that she didn’t feel excluded. However, that year, she became quiet and withdrawn. I knew all was not right, but I couldn’t pinpoint the problem. She had always been a happy and easy-going child; now she seemed uncharacteristically grumpy.


By Christmas, she was looking thinner, but was still eating a large, full plate of supper – I couldn’t see a difference in quantity but I could see a difference in ingredients. The awful thing was that I accepted it. I thought, ‘She’s 14 and a lot of people that age go on little diets’.


VITAL SIGNS


By October, I’d clicked that things weren’t right. Alice was drinking copious amounts of water and becoming increasingly thin and quiet. She’d started to eat alone; had developed a fascination with food, and took hours to shop in Tesco. I feared that she was diabetic as she’d lost weight and was drinking constantly – the usual symptoms. After tests, our GP ruled out diabetes but asked few questions. Back at home the tension between us mounted. But surprisingly, at the time, the weight loss worried me less than Alice’s withdrawal. Ironically, her obsession with food had completely thrown me off the scent.

Very quietly Alice’s portions got smaller and she removed more from her diet. By March 2001, there was no doubt about it: she was terribly thin. It was the exercising that finally made me twig: Alice wasn’t yet jumping but was permanently on the go. I phoned the Eating Disorders Association and we saw a specialist. By the time we got back from France in May, Alice was hardly eating a thing. She withdrew even more, washed herself obsessively – her hands became red raw – and exercised excessively.

I blamed myself for letting things get so out of control. Alice immediately became an outpatient at a specialist eating-disorder unit and later on, in July, she was admitted as an outpatient seven days a week. The consultant said, ‘If we take meals out of the equation then surely, Mrs Kingsley, you can manage picking Alice up at night, getting her into bed and back to the unit for breakfast?’ But actually I couldn’t. For me it was a tremendous admittance to say, ‘I’m sorry. I can’t control Alice at home for 12 hours at night’. I felt completely useless and I was desperately worried about her: she was so thin, so unwell. (It turned out she had been making herself sick at home.) There was just nothing of Alice – as we knew her – left. I kept thinking, ‘Where has Alice gone?’ I honestly thought that she’d left us."

Those were the worst ten weeks for me. Alice was so thin that her under-wire bra cut her; she had a bed sore on her back from her midnight exercises, and she’d take up to three hours showering because of her by now demented jumping. I couldn’t see how we would ever solve it. Obviously being thin was a massive issue but she was also obsessive. The two things combined were a mental hurdle.


"Alice was so thin that her under-wire bra cut her, she had a bed sore on her back from her midnight exercises.


The solution in the end was to realise that we were completely and utterly beaten. We both accepted it. It wasn’t a case of giving up. Alice ran the choice of being discharged or taking medication (antidepressant Fluoxodine). We had to choose the latter. Seeing her confined to a bed was awful, but it was the right thing to do. Fortunately, because we lived close by, we could see her every day to be with her while she was having treatment. I realised then that support meant saying ‘no’ to her, rather than letting her manipulate us any more. It was in the hospital that we found an environment where we could share our experiences of ‘Planet Anorexia’. We met kindred spirits and it was here that we slowly began putting the pieces of our lives back together.


LIGHT AT THE END OF THE TUNNEL

By October 2001, we’d turned a corner. We saw gradual progression. Even though Alice was having huge mood swings, she continued to improve. On 3 December, 2001, she was discharged from the unit. In January, she returned to school.

Seeing Alice as she is now is brilliant. I look at her and I am so relieved that you never met Alice four years ago, because she was a different person. In hindsight, the last five years of my life have been a journey I could never have imagined taking. I still don’t understand all the inner complexities of anorexia, but I have learnt to help Alice on her day to day managing of it. I hope our book will help others who are suffering too.

THE FACTS

  • Anorexia is a psychological disorder. Sufferers have a distorted view of their own body image, an intense fear of gaining weight and deliberately starve themselves.
  • It is diagnosed when the sufferer’s weight has dropped 15% below what is considered to be their ‘normal’ body weight.
  • It affects 1-2% of the population, mostly women aged 15 to 30.
  • On average, 40% of sufferers will make a full recovery, while 50% will remain quite, or seriously, threatened by their illness.
  • There is a 10% death rate: the highest of any mental illness.
  • It can permanently damage the digestive system and cause organ damage as well as brittle bones and infertility. 

THE SYMPTOMS

  • Weight loss, loss of menstrual cycle and sunken facial features.
  • Insomnia, depression, mood swings, limited concentration, tiredness, lethargy.
  • Skin problems, excess body hair growth, poor circulation.

Read the full article, here


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