Boys Get Anorexia Too Coping with male eating disorders in the family Jenny Langley © Jenny Langley 2006 First published 2006 Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may be reproduced, stored or transmitted in any form, or by any means, only with the prior permission in writing of the publishers, or in the case of reprographic reproduction, in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers. Rights to copy pages marked as handouts, certificates or overhead foils are extended to the purchaser of the publication for his/her use. The right of the author to be identified as Author of this work has been asserted by him/her in accordance with the Copyright, Design and Patents Act 1988. Paul Chapman Publishing A SAGE Publications Company 1 Oliver’s Yard 55 City Road London EC1Y 1SP SAGE Publications Inc. 2455 Teller Road Thousand Oaks, California 91320 SAGE Publications India Pvt Ltd. B-42, Panchsheel Enclave Post Box 4109 New Delhi 110 017 Commissioning Editor: Barbara Maines Editorial Team: Mel Maines, Wendy Ogden, Sarah Lynch Designer: Nick Shearn A catalogue record for this book is available from the British Library Library of Congress Control Number 2005907004 ISBN10 1-4129-2021 3 ISBN13 978-1-4129 2021-6 ISBN10 1-4129-2022-1 (pbk) ISBN13 978-1-4129-2022-3 Printed on paper from sustainable resources. Printed in Great Britain by The Cromwell Press Ltd., Trowbridge, Wiltshire. Contents Foreword v Author’s Note vii Preface ix Part One : About Anorexia in Boys 1 1. What is anorexia and what are the effects? 2 2. Boys don’t get anorexia, do they? 4 3. Triggers for boy anorexia 5 4. What to look out for 8 5. Living with an anorexic boy 10 6. Effects on the family 22 7. Self-help 27 8. Treatment options 31 9. Therapy, therapy, therapy 43 10. Healthy eating 49 11. Caring for the carer 56 12. Returning to normal life 61 13. Do boys get other eating disorders? 65 Suggested Reading List 71 List of Useful Organisations 74 Part Two : Joe’s Story 75 14. Setting the scene – happy chaos 76 15. Decline and fall 82 16. The diagnosis – watch out for Rex 97 17. The treatment – heaven or hell? 107 18. Recovering too quickly? Watch out for Rex 131 19. Coming home – will Rex come too? 165 20. Moving on – Rex has gone! 172 v 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 vi 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 vii 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 viii 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. • • • • ix 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.