Boys Get Anorexia Too: Coping with Male Eating Disorders in the Family

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Jenny Langley

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    Foreword

    ‘Boys don't get anorexia’ is a phrase that any parent who is concerned about a son who is losing too much weight or exercising excessively will hear at some time or other, hopefully from an uninformed friend or relative rather than a health professional.

    Well boys DO get eating disorders and in this very personal and insightful book Jenny Langley looks at what it means to have a son who does in fact have anorexia.

    Research, as well as anecdotal evidence, indicates that as many as 20 to 25% of school age adolescents who are affected by an eating disorder are male. However, the number of males diagnosed and seeking treatment is roughly half that. At Eating Disorders Association we know from callers to both our adult and youth helplines that males can find it hard to believe that they may have an eating disorder. Getting it diagnosed may be a struggle and finding appropriate treatment can be very problematic.

    It is reassuring that with the approval of her son, Jenny has decided to write about the development of anorexia in boys and has taken the trouble to investigate and write about the wider issues in a way that will be helpful to parents and carers who are concerned about a young boy.

    Any parent with an eating disorder in the family will know at first hand the problems that a young boy already caught up in the maelstrom of adolescence can both experience, and cause when anorexia arrives. Jenny writes about the way in which the disorder crept up on her family and then seemed to take over the household. Many parents will be relieved to know that they are not the only ones to experience this powerful and generally negative mix of emotions that surrounds and engulfs everyone nearby. Recent research indicates that boys affected by eating disorders are much more likely to blame themselves for their problems than girls do, complicating the already difficult process of recovery.

    Jenny was lucky that the team involved with Joe's treatment involved her at every stage of the therapy. Although Jenny and the team often had very different views on Joe's progress, and at times the relationship was very strained, she and her family were never totally excluded. Many parents have found that talking to their doctor and even psychologists and psychiatrists is often not straightforward and many health professionals who struggle with these most complex of disorders hide behind a smokescreen of ‘confidentiality’ adding to parents' confusion and concern. Open communication and talking therapy is the key to recovery from eating disorders and except for those few cases where some form of abuse is at the heart of the problem, parents should be informed and involved with the whole treatment process.

    Nevertheless, it is important to differentiate between the confidentiality of the consulting room and straightforward information about the progress of treatment. The relationship between patient and therapist can be slow to develop and difficult to unravel so it is entirely appropriate for the conversations during therapy to be confidential in every sense of the word. However, being prepared to discuss whether therapy is going as well as expected or is proving more difficult without needing to go into detail is the sort of information that should routinely be shared with parents or carers.

    Many people find that pressured and confused health professionals can use the age of a patient (the NHS recognises 16 years old as an appropriate age for people to be treated as adults) to choose not to communicate with parents and carers who nevertheless are expected to care for the sufferer when they come home, either at weekends or at the end of the therapy. The Government Mental Health National Service Framework clearly states that patients must have a care plan that is drawn up with the involvement of the carer and the National Institute of Clinical Excellence (NICE) guidelines specifically recommend that all family members should be included in the treatment of children and adolescents with eating disorders.

    Sadly, many carers find themselves having to fight to be included in the therapeutic process instead of being there by invitation from the professionals. This leads to even greater stress and disharmony in the family. Many parents and carers will find the practical tips Jenny provides on how best to approach medical professionals initially, and how to stay involved as treatment progresses, very useful.

    As many parents have discovered, the problems do not disappear when the hospital takes over and the slow painful climb of Jenny's son back to recovery is recounted in uncomfortable detail. Ultimately however this is a story of hope. Joe does recover eventually and although life is by no means the same as before, it does return to a new normality.

    Steve Bloomfield, Head of Communications, Eating Disorders Association

    Author's Note

    It is common knowledge that eating disorders, and in particular anorexia, are a girl thing, and we have all read articles containing startling facts such as:

    One in 20 women will suffer from an eating disorder in their lifetime. In Britain, anorexia and bulimia have reached catastrophic levels. Maureen Rice, Observer Sunday July 29, 2001

    Of course it is also logical to assume that men and boys are not totally immune, but how many incidences of male eating disorders have you heard of? Certainly up until my son was afflicted I hadn't ever heard of any examples. It turned out neither had my GP, any of the teachers at my son's school, nor any of my friends or work colleagues. So it was a huge shock when my 12-year-old son started to disappear before my eyes. He was a gifted child, in the streamed class at school, and a great sportsman representing the school at football, his main passion, as well as cross-country, athletics, rugby, cricket and swimming, and he was very popular with his peers at school. His anorexia developed startlingly quickly, he lost 25% of his body weight in four months, before collapsing and being rushed into hospital. Six months on and after three and a half months in a residential adolescent unit, I am pleased to say that he was well on the way to recovery. Two years further on and he is a thriving, healthy and happy 15-year-old, who is probably stronger both mentally and physically, having beaten his illness. The relapse rate is high for anorexics, but we are keeping our fingers crossed that this won't happen to us, and we are looking forward to him having a healthy and happy future.

    The reason for writing this book, in which I describe our experiences and outline the treatment options available, is that we felt totally alone as parents of an anorexic boy. The eating disorder societies were very helpful and sympathetic but could not put me in contact with other families who had experienced boy anorexia. The professionals assured me that boy anorexia is not unheard of, and especially in the younger age group the balance between boys and girls is more even, but as far as I know there is no literature on this specific subject. I managed to locate a couple of American books on male eating disorders, which have been written in the last couple of years. They were very interesting, and at least acknowledged that there has been an explosion in the incidence of eating disorders in the male population over the last few decades. This provided me with some comfort, but didn't really provide me with any guidance as to the best course of action, being a mother in the UK, watching her son starve himself almost to death in front of her eyes. I would like to think that this book will give hope and practical guidance to any family going through a similar experience.

    Anorexia is a terrifying experience for any family to go through, but remember:

    • Boys can get anorexia too.
    • Anorexia can be beaten.
    • Look forward not back.
    • Never give up hope.

    And most importantly, you are not alone.

    Preface

    Tuesday 12 March 2002

    Joe started moving around his room at 5.30 am. Since his weight had dropped below 36 kg I knew he hadn't been sleeping very well. I am a light sleeper myself and was on a high state of alert to any sounds in the night from my eldest son. His weight had dropped from 42 kg to 32 kg in just four months, and he was in a constant state of agitation and anxiety. We were still awaiting the results from endless blood tests, and had yet to rule out a seemingly endless list of terrible diseases that could be the root cause. I had lain awake night after night considering illnesses ranging from leukemia, and stomach cancer, to thyroid problems, and glandular fever. But in my heart of hearts I knew my son was suffering from an acute case of anorexia, and as every day passed it was taking a firmer grip.

    At 6.30 am, after an hour of intense repetitive exercise (mainly press-ups and sit-ups) in his bedroom, Joe went downstairs. He liked to have breakfast on his own, as he had become extremely self-conscious about eating in front of other people, even within our family. I knew that if I tried to force him to eat with us, or even to suggest he should eat a little more, he would become deeply upset and eat nothing.

    Getting from his bedroom to the kitchen involved a whole array of rituals. Joe had become deeply superstitious and believed that some terrible fate would overcome him if he did not do each and every one of his rituals, which seemed to be increasing as each day passed. First Joe stopped at the boundary between his bedroom and the hall. He stared, for a few seconds, at the metal strip separating the two carpets, and then carefully stepped over it, as if stepping on it might cause an explosion. Each step on the staircase was like an individual challenge, with Joe placing first his right foot quickly followed by his left foot on each individual step. Halfway down the stairs Joe did fifty to sixty pull-ups as he could reach up to the banister on the landing above. He then did another set of pull-ups when he walked past the stairs in the hallway on the way to the kitchen. Once in the kitchen Joe would touch all the surfaces on the way to the fridge. Breakfast for Joe used to be one or two large bowls of cereal, but now it was the same everyday, a Muller Light yoghurt. I had tried filling the fridge with high fat yoghurts, but then Joe would have no breakfast at all. As for all his meals, Joe ate a little less each day.

    At this stage he ate about two thirds of the yoghurt, and on a good day might have a quarter glass of squash or water.

    After breakfast Joe did twenty minutes of sit-ups in front of the TV, and then sat on the edge of the sofa, alternately tapping his feet on the floor and counting on his fingers. By 8 am, Joe looked exhausted, his skin had a grey pallor and his eyes and cheeks were sunken hollows.

    My friend Sophie was doing the school run that morning. I watched as Joe shuffled out to the car and slumped into the back seat to continue counting on his fingers and tapping his feet for the ten minute journey to school. Sophie rang me as soon as she got home. We had discussed Joe's deterioration several times already that week, but she was particularly alarmed at how ill Joe looked that morning. He had staggered from the car, clutching his briefcase as if it were a dead weight, and Sophie had been very tempted to scoop him up and bring him straight home. However, I knew that the school would call me immediately if Joe wasn't coping in class, and we had stopped him doing any sport a week before because of his fragile condition.

    I tried to focus on my work for the next few hours, but there were no real stories in the stock market and it was a struggle to get the clients interested in anything. The morning dragged and every time my home phone rang I leapt out of my skin, thinking that Joe had perhaps collapsed at school. But he coped quite well that particular morning and even managed a smile when I picked him up at lunchtime. He had been coming home for lunch for several weeks now because he couldn't eat the school lunches in front of his school friends. He had the same thing for lunch everyday: a ham sandwich, a banana and a chocolate bar with a small drink. This doesn't sound too bad, but each day he would eat slightly less. Today he managed about half the sandwich, a bite of the banana and the chocolate bar and half a glass of orange squash. After lunch Joe felt really bloated so he did half an hour of sit-ups and press-ups before I took him back to school for a couple of lessons. I knew that if I tried to stop Joe, he would either burst into tears or get extremely angry, both of which were distressing for both of us, so I said nothing.

    I picked Joe up again from school at 3 pm, two hours earlier than normal because Joe was no longer able to join in with any sporting activities. About a week earlier he had collapsed into a heap of tears after a rugby session, because he was so exhausted, and everyone agreed it was probably best if Joe stopped doing games until he was a little stronger. He asked if we could go for a walk in the local Country Park. We did this often, as Joe seemed to find this calmed him down. He couldn't walk very far and we walked slowly, with Joe dragging his left foot along the ground as though he was somehow crippled, but this was just another of the habits he had developed. As we walked through the park Joe made a point of picking up even the smallest pieces of litter and making a detour to the nearest bin. When he had first started doing this I had thought it was a very good habit, but like all his habits it had become a complete obsession. On this particular day Joe talked quite openly about his illness. “Mummy I wish I could get better, but it hurts so much when I eat too much. I know I need to put on weight but I'm scared of getting fat. Do you think the doctors can help? I really want to get better for the football season because I could be captain of the first team at school.” I gave Joe all the reassurance that I could, but I was petrified over what the future would bring. Joe had declined so quickly and whilst we were having a sensible conversation walking in the park, I knew that as soon as we got home and the issue of dinner was raised, there would be another battle, as the anorexia reared its ugly head and distorted my young son's brain. Given that Joe seemed happy to talk I asked him why he thought he had become ill, and was surprised to get a fairly detailed answer. “Mummy I have just become obsessed about losing weight and I don't know how to stop. I thought if I lost some weight I would be able to play football better, and I wanted to win the school cross-country run. Now I can't even play football, and I know I won't be able to compete in the school cross-country next week. Also a boy last term said I had a big bum. I know he didn't mean any harm, but it really upset me, and I can't cope with being in the streamed class anymore, it's just too hard.” By this stage Joe was sobbing, we stopped walking and I put my arms around his fragile frame. I hoped and prayed that this was a turning point. Joe now acknowledged his illness, we had a huge mountain to climb to restore Joe to health, but at least Joe was willing to try, and that was the first big hurdle to get over. By this stage we had been walking, albeit very slowly, for twenty minutes. Joe was exhausted so we returned to the car and headed home.

    Once Joe was settled in front of the TV, I phoned his form teacher. Peter had been brilliant from the very first day that I had alerted him to my concerns over Joe's weight, and by this stage we spoke every day. He told me that Joe had had an uneventful day at school, but all the teachers were worried about him and Joe was a constant topic of conversation in the staff room. Peter was concerned that Joe was becoming more and more withdrawn socially. Once a popular boy with his classmates, he was now sitting on his own in class and rather than joining in with the games at break, he was standing away from the crowd, watching the antics going on but not wanting to be involved. A few of Joe's closest friends had tried to bring him back within the group, but with little effect, and I knew from my conversations with their mums that the boys couldn't understand what had happened to the Joe that they knew so well. Peter also mentioned that Joe's writing had become even more flowery in the past week, almost to the extent of being totally illegible. Peter had alerted me to this a couple of weeks earlier and it was another tangible indicator that Joe was declining as every week went by. Peter and I agreed that Joe would not be able to attend school full time for much longer, but Peter was happy for Joe to attend on a part-time basis, even if only for half an hour at a time. I relayed my conversation with Joe in the park to Peter and he agreed that this was a major step forward, and said he would of course do anything he could to help.

    I picked up Joe's younger brother Tom at 5.15 pm. Joe came with me and sat huddled like a little old man in the car, chewing his knuckles. Joe's hands had become scaly and raw in recent weeks, as he chewed nervously on them much of the time. Tom was in his normal happy mood, and chattered away about his day at school as we drove home. But once we got home Tom was careful to keep out of Joe's way. They had become quite distant in recent weeks. Tom couldn't understand what had happened to his big brother and didn't really want to talk about it. His way of coping was to keep busy doing things which didn't involve Joe, and he spent as much time as possible out of the house playing with his friends from the neighbouring houses.

    I prepared a simple dinner for the boys: fish fingers, pasta, peas and carrots. Tom demolished his plateful in record time and disappeared outside to play on the trampoline. Joe was a different story, he pushed his food around the plate, and after twenty minutes had managed one fish finger, six pieces of pasta and a couple of mouthfuls of peas and carrots. He then purposefully placed his knife and fork neatly together on the plate and glared at me, daring me to say something. I gently tried to persuade him to have just a few more mouthfuls, but he couldn't. He clutched his stomach, which was rock hard from all the sit-ups and malnutrition, and was obviously in considerable pain. I backed off, exhausted from this daily battle. We desperately needed professional medical help. I had finally managed to get an appointment with a child psychiatrist which was now just two days away, so I had decided that the best policy between now and then was to keep Joe as calm as possible, and hope that he didn't lose too much more weight.

    On the dot of 7 pm, after half an hour of sit-ups and press-ups, Joe went upstairs for his daily shower, doing his pull-ups on the stairs as normal. I followed him up and got him to step on the scales. 32 kg, another kilo lost in the past week. Joe was secretly delighted. I was devastated. I left him to his shower, which always took half an hour. He washed his hands meticulously throughout the day and scrubbed his body thoroughly every evening. He left the bathroom spotless with the towel hanging perfectly on the rail. Then he retreated to his immaculately tidy bedroom to read his Dorling Kindersley children's bible. This was another of his comforts, he read out loud, tracing the words with his finger.

    At 8.30 pm I went up to say goodnight. Joe looked utterly exhausted, his shrivelled body totally swamped by pyjamas that had fit him perfectly well just four months earlier. He hugged me for a long time, I felt I was losing him to this terrible disease and he sensed my anxiety. “Don't worry Mummy, I'll be OK. Please don't be upset, it makes me feel really bad.” I retreated back downstairs and prepared supper for my husband James. James could sense that we had had another bad day, but simply didn't know what else to say. As we sat down for supper we could hear a rhythmic thudding coming through the ceiling from Joe's bedroom, yet more sit-ups or press-ups, just in case he had eaten too much for supper and might put a gram or two weight back on. I burst into floods of tears and James came around the table to give me a big reassuring hug. I kept repeating, “I just want my son back,” but there was no way of knowing when, or if, this would ever happen.

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