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- Herausgeber: Hammersmith Health Books
- Kategorie: Fachliteratur
- Sprache: Englisch
- Veröffentlichungsjahr: 2019
Since the first edition of Hope with Eating Disorders was published in 2012, eating disorders have become more widely recognised and treatments have progressed, as have attitudes to this most dangerous of mental health problems. In this second edition, which maintains Lynn Crilly's warm, non-judgemental, family-friendly approach, the more recently recognised eating disorders have been included, the range of treatment options – both mainstream and alternative – has been fully reviewed and revised, and the impact of social and technological change has been fully accommodated, with the role of social media for good and ill to the fore. New case histories highlight key issues, and throughout all references to research and stats have been reviewed and updated. Men's eating disorders are now addressed by contributing author Dr Russell Delderfield. Since originally writing Hope with Eating Disorders, Lynn has experienced seven years of counselling practice and seven years of her own daughter's recovery from an eating disorder and obsessive compulsive disorder, underpinning her realistic insight into what recovery actually is and means. Hope with Eating Disorders is a practical, supportive guide for anyone helping someone with an eating disorder be they a family member, teacher, sports coach, workplace colleague or friend.
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Hope with Eating Disorders
A self-help guide for parents, carers and friends of sufferers
Second edition
Lynn Crilly
With a Foreword by Professor Janet Treasure
This book is dedicated to…
the memory of my Auntie Babs – thank you for giving me the strength to start writing the first edition of this book; and to my wonderful husband, Kevin, and our beautiful daughters, Charlotte and Samantha, for giving me the strength to finish it and go on to write many more.
Contents
About Lynn Crilly
Lynn Crilly is an award-winning counsellor and mother of twin girls. When one of her twin daughters, Samantha, struggled with OCD and anorexia nervosa, having followed the conventional therapy routes to no avail, Lynn took the decision to follow her gut instincts and rehabilitate Samantha herself. She subsequently developed her unique form of counselling to support sufferers and their families going through similar experiences.
Lynn continues to work with families every day, battling mental health issues at her clinic in Surrey, UK. She uses the knowledge and experience she has gained to write self-help books covering an array of mental health issues, with the aim to help combat stigma and destructive myths whilst also providing a positive and constructive way forward for families and carers affected. She is admired for her passion and understanding – something she attributes to the strength and loyalty of her family and friends, with whom she spends as much time as possible. www.lynncrilly.com
Acknowledgements
First and foremost, I would like to say a BIG thank you to my wonderful husband, Kevin, who has always given me his unconditional love and support. His unquestioning belief in me has given me the strength to achieve all I have so far … I love you more with every new day.
Also, thank you to our beautiful twin daughters, Charlotte and Samantha. I am so proud of the gorgeous young ladies you have become and love you both very much!
A big thank you to Callum and Jay for loving my girls unconditionally and making my family complete – love you both loads.
Much love to my mum and dad, who have always been there for me, with the kettle on and ready to listen, with their constant love and support.
To my brother, Steve, and sister-in-law, Sue, thank you for being there.
A special thank you to Kate, Wendy, Jill, Gerry, Leanne, Hannah, Dionne, Kyra, Michelle, Shauna, Neil and all my friends who continue to love me unconditionally – your friendship is a rare and valued gift.
A warm thank you to our wonderful GPs, past and present, Dr John Dalzell and Dr Sarah Benney, who over the years have given us as a family and me as a professional their unreserved support.
Thank you to all my clients, both past and present, who have put their trust and belief in me and my work, which has enabled me to help and support them to make the positive changes needed in their lives and, in doing so, changing mine.
A special thank you to Dr Russell Delderfield for all his encouragement and support over the years, and for giving his expertise and knowledge in Chapter 8 – Eating disorders in men.
A huge thank you to Mel Hunter, who has been my writing hand all the way through Hope with Eating Disorders 2nd edition.
I have been incredibly privileged to have been supported by so many wonderful people from all walks of life, who have all trusted and believed in me enough to make a contribution to this book – for that I thank you all.
Lastly, and by no means least, thank you to my lovely publisher, Georgina Bentliff (Hammersmith Health Books), for being so supportive, open minded and a total pleasure to work with.
Once again, a big thank you to all mentioned above and the many others who have championed, helped and supported me over the years. Without each and every one of you, I know I would not be who, and where, I am today, both personally and professionally. For this I will always be grateful.
Foreword
Working with people with eating disorders for over 36 years in order to understand the illness and to help on the way to recovery, I have often heard that one of the most important things that carers can do is maintain hope. This book encapsulates the essence of how hope can be generated and sustained. Hope can be built on understanding more about the illness, building resilience in young people and their families to withstand some of the pressures that can adversely shape development, and increasing trust that recovery is attainable.
A junior doctor described her 12-year illness in a Personal View to the British Medical Journal. She said she could summarise her illness in one word: ‘isolation’. Although numerous paths lead to isolation, including biological and psychological factors, social factors are of key importance. The noxious influence of shame and stigma drives the individual, and their family, too, into a secret cell of loneliness bereft of the social glue of shared eating and connection.
Lynn demonstrates what can be attained through curiosity and an open mind, and the refusal to accept stigma and secrecy. This book contains the lived experience of diverse forms of eating disorders, and glimpses into the variety of ways in which recovery can be attained. Connecting with others with love and respect is key, and this book demonstrates how this can be done.
Professor Janet Treasure PhD FRCP FRCPsych Director of the Eating Disorders Service, UK
To cut a long story short…
Anyone looking at us 14 years ago would have assumed from the outside that we were a perfectly ‘normal’ family: my husband Kevin and I and our beautiful twin daughters, Charlotte and Samantha, seemed to have everything anyone could possibly wish for, and more. We were in a really good place in our lives, glued together by the strong foundations of our marriage and two happy, healthy girls. Of course, we had our ups and downs like most couples, and life threw challenges our way, but we always worked together to overcome them and move forward, trying carefully to balance our scaffolding business and family life, just like any other working parents. We were doing okay… Or so we thought.
Our picture-perfect little world fell apart when Samantha was diagnosed with the early stages of anorexia nervosa at the start of her teenage years. We had had very little experience of mental illness at that time and were not prepared for what was to come. Looking back, Samantha had always exhibited a vivid imagination, creating unlikely and outlandish scenarios from a very early age, though to her, these imaginings seemed very real, leading her to repeatedly check door locks, window locks, toilet seats and light switches. We had no knowledge at all of eating disorders or OCD when the girls were young and dismissed those peculiarities as being her quirky traits, her uniqueness of character. It was something we neither encouraged, discouraged nor over-analysed – it was just Samantha being Samantha.
Now, with the diagnosis of anorexia nervosa, we were equally and naively unaware of the condition or the precise help or treatment needed for our lovely daughter as we watched her spiral so quickly out of control and into the grip of something which affected each of us individually and our family as a whole. I had no idea how to deal with eating disorders at that time, but my husband and I believed that if we entrusted Samantha’s health to the ‘system’ she would get better – we had no reason to think otherwise at this point. However, in hindsight, and knowing what I know now, had we had the knowledge and understanding to enable us to identify and address what we now know was OCD in Samantha’s childhood, I feel we might have been in a stronger position to intervene at a much earlier stage. Who knows, we might have even nipped it all in the bud…
Over the next three devastating years we tried everything we could to get her the help she so desperately needed, from our local (very supportive) GP to both NHS and private clinics and therapists, but sadly nothing appeared to be working for Samantha. As things progressed from bad to worse we all felt completely helpless as we watched our beautiful daughter become a shadow of her former self, the trauma fragmenting the family with each of us suffering in our own particular way.
Like any parent, I wanted to do the best I could to help my daughter to recover both mentally and physically and support my family to have a better understanding of her illness. I read many books and scoured the internet for as much information and guidance as I could get my hands on, but could not find anything that I or my family could truly relate to or which gave me any real hope that there was a light at the end of the tunnel for Samantha and us as a family. It seemed to me that we were all feeling around in the dark, not knowing what we were supposed to say or do. Every website, book or support group I found seemed to focus mainly on the actual person experiencing the illness and not the family, friends and/or carers who I felt needed help and support just as much as the sufferer. I desperately needed answers and wanted to reach out to others, anybody with a genuine understanding of what was happening to us, to help us stop Samantha’s condition in its tracks, but to no avail. There was nothing.
I was also deeply troubled by the fact that my husband, my other daughter, Charlotte, and myself were at times all made to feel that Samantha’s illness had somehow been our fault. We were living in what felt like a pressure cooker, thinking we were going to explode at any given moment, constantly scrutinising ourselves, which in itself was only adding to the overall tension. It seemed like there was so much blame being flung around while answers were thin on the ground and those closest to the sufferer were often an easy target.
After having exhausted all the options available to us, the painful truth was that Samantha was not getting any better – if anything, she was becoming more and more unwell both physically and mentally. So, in a moment of desperation and with my family falling apart, as radical as it may have been, I let my intuition guide me and took the decision to rehabilitate her myself. Thankfully, with the full support of our GP, the girls’ school and our family and friends, I was able to dedicate myself completely to Samantha, injecting positive thinking, love and hope, whilst trying to show her a life outside of the eating disorder, never giving up on my belief that she would get better no matter how difficult the situation became. I worked closely with Samantha’s school, knowing it was important to keep her in as normal an environment as possible, and everyone involved worked as a team throughout the recovery process.
There were no set rules to follow, no specific path to guide me, but by committing myself fully to Samantha’s recovery and trying my utmost to understand things from her troubled perspective, I slowly encouraged her to start communicating with me. She began sharing her distorted and, at times, highly irrational view of her world and her innermost thoughts, her head engaged in constant battle with itself. Patience, love and open-mindedness were paramount, not just for Samantha but for the family as a unit, ensuring the lines of communication were left open at all times between us. We needed to all be on the same page so we could help Samantha and heal together. It turned out to be the steepest learning curve I could have ever imagined.
Looking back, it was quite a controversial thing to do, I suppose, but at the time my instinct told me it was the right and only way to get my daughter better as nothing appeared to have had an impact so far. Step by step over the following year or so, Samantha slowly found her way back to us and began to leave behind the eating disorder that had had such a profound and devastating effect, not only on her but on all of us. However, we were not completely out of the woods yet and if I am honest I still had my suspicions that there was something else, some underlying factor that was stalling Samantha’s recovery. She was still very vulnerable, and being exposed to outside influences, including an intense relationship with a friend who was also suffering from OCD, had a negative impact on her progress. She inadvertently began to copy some of this friend’s traits and habits relating to food, which was both her weakness and her catalyst, and she subsequently suffered a major setback as OCD began to manifest itself in place of the eating disorder. Control was once again the core element for her, although she was more out of control than she realised. That is the illusion with mental illnesses such as eating disorders and OCD – the sufferer believes that they have full control, when in reality it is completely the opposite and the mental illness has complete control over them. Food and everything associated with it was pivotal in Samantha’s mental illness, so it seemed a fairly predictable and inevitable progression that OCD would come to the forefront once again and latch onto this weakness, making her recovery even more difficult and challenging. This time Samantha was more comfortable about opening up to me and began to explain why she felt a certain way and why she had to carry out certain acts and rituals. This helped me to accept and understand the OCD much more clearly this time around. With Samantha’s determination to get better, we ploughed on together, a united team against OCD, gently rebuilding our family life into a new and stronger version of what it had previously been.
Kevin, my husband, has never really understood mental illness, and has never pretended to, but the pressure and the enormity of it all took its toll on us briefly at the height of Samantha’s illness, to the point that I once asked him to leave. Thankfully he ignored my request and stayed, continuing to provide his powerful and unconditional love and support, without which we could never have survived. He used to think Samantha was intentionally behaving as she did for attention, but now he readily accepts things for what they are, supporting Samantha unconditionally, even though, sometimes, he struggles to get his head around her quirky ways of thinking.
Samantha’s twin sister, Charlotte, has also been pivotal in her recovery and now works alongside me at my practice, with an empathy that can only come from first-hand experience. She has forfeited pieces of her own life so that Samantha could be given the full-on care that she needed and the bond between my two girls is now unbelievably strong. Their mutual respect for one another, as a result of the journey they have shared, is testament to that.
I have learnt through all of this the importance of constant communication, patience, non-judgement, unconditional love and most of all HOPE, and that in fact there is no such thing as the ‘perfect’ family. Trying to be perfect is not only unrealistic; it can be dangerous.
Sometime into Samantha’s recovery, I was contacted by the mother of a 17-year-old girl who was suffering from an eating disorder. She asked me if I could help as they were finding, as we had, that none of the conventional routes was making any difference. Encouraged by my husband, I approached their situation just as I had approached Samantha’s, looking beyond her illness to the person within and giving them the unconditional and non-judgemental support that I realised from our experience had been so beneficial. Having been able to help her, and her family, successfully, I made the decision to build my own counselling practice based on everything I had read, learnt and experienced from our own journey with Samantha. I then went on to do some studying of my own, including training as a Master of NLP (Neuro-linguistic Programming – see page 120) and a Psy-TaP practitioner (see page 134). I was keen to work with other sufferers and their families, giving them the unreserved support and complete lack of judgement that my own experience had taught me were vital. I tentatively opened my doors to people from all walks of life struggling to deal with mental illness, be it the sufferer or a supportive loved one. My little successes were never shouted from the rooftops but from then on people seemed to find me through recommendation and word of mouth. I am now contacted on a daily basis by frantic and frightened parents, carers, siblings and friends from all over the country, all of whom have concerns about children, some as young as nine years old, most just wanting to talk to me, desperate for a glimmer of hope. I now help people suffering from eating disorders, OCD, anxiety, depression and low self-esteem.
The way I interact with my clients may seem a little unorthodox to some. However, I feel it is important to get to know the person as a whole rather than just seeing them through the lens of their illness, and working alongside the family rather than with just one person helps to build a united front against the illness. No two people who enter my office are ever the same and all experience the issues in a way that is unique to them; hence, the way I approach their treatment is similarly unique to each client. I am learning about each individual case as it naturally unfolds so I can give as much time and attention as we need both in and outside our sessions to build a mutual trust within our relationship which enables me to be one step ahead of the illness, in turn facilitating a quicker and more effective recovery for all concerned; we may do puzzles together while we chat, or make jewellery or do other arts and crafts projects. The atmosphere tends to be much less intense than the traditional image of the patient-therapist relationship and can even be fun! I have certainly learnt a lot from working with people in this way, and I focus on maintaining a positive environment, so from the minute they walk in they feel comfortable and at ease and from the very start they know they can get better and that they are in control of their own recovery. I also respond on an emotional level rather than a clinical one to the things they tell me. I do not always get it right, and I do not pretend to; sometimes there may be the need for additional assistance and input from other avenues, but my practical and down-to-earth approach has earned me the endearing handle of ‘Fairy Godmother’.
So here I am, many years later. If you had told me over 10 years ago that I would be doing what I am doing today I would not have believed you. Nor could I have foreseen that our future as a family would be so much healthier and happier – our dynamics have changed in a way I did not think possible. During these rewarding years I have had the privilege of working with some wonderful people and their families, each and every one of them unique. Whilst I have been able to support and guide them through their journeys, I too have learnt from them. My clients have said that they find my practical and down-toearth approach really refreshing and even compared me to the therapist in the film The King’s Speech on more than one occasion! His methods were unconventional and unorthodox – but they got results. I never expected my practice to expand to the scale it has, but through this I have been able to share my ever-growing knowledge of many kinds of mental illness and help clients to find the best route towards recovery, not just for the sufferer but for those close to them.
My ever-increasing client list highlighted just how little emotional support or real empathy there was available for the carers, friends and families of those suffering from mental illness and having had first-hand experience of the destruction it can cause within the family unit, I felt compelled to write my first book – Hope with Eating Disorders, published in 2012. I was keen to share what I had learnt from our journey with Samantha in the hope that it would bring some guidance, comfort, strength and hope to others. Outwardly it was impossible to identify families who were going through similar experiences, yet when I spoke openly about what we had experienced within our family, I learnt that most people I knew were struggling with something behind closed doors. They had been too afraid to talk about it for fear of the stigma or judgement which sadly still surrounds mental health issues, even in today’s society, though a staggering one in four of us will experience or suffer from some form of mental illness at one time in our lives. It was then I realised how widespread issues like self-harm, anxiety, depression, OCD and eating disorders were, and how confusing the wealth of information available on these subjects could be to the reader. Despite many high-profile initiatives by the Government and various celebrities making mental health awareness a target, there are still countless people of all ages suffering in silence, in need of help and support, and many loved ones, friends and carers, confused, frightened and unsure of how to help them.
Looking back, although Samantha had left most of her issues behind, she never truly felt comfortable in her own skin until recently, when she reignited her love for drama and the arts. Consequently, we have watched her grow into a beautiful, confident and vibrant young lady, pursuing a passion that allows her to express herself. Her passion and desire for life have been strengthened by the encouragement of her supportive and loving fiancé, Jay. Charlotte also has a wonderful, understanding fiancé, Callum, who has been on this journey with us since the beginning, so I am hugely relieved – being happy and healthy is all I have ever wanted for both of my girls.
Which brings us to Hope with Eating Disorders 2nd edition… Having experienced at first hand some of what you are going through, my main aim in writing the first edition of this book was to help you understand eating disorders and identify the symptoms of this destructive mental illness as early as you possibly could, allowing you to intervene swiftly and with more insight into the different treatments available, both of which are paramount for a quicker and more effective long-term recovery.
That first edition was published in 2012 and, I am proud to say, was very well received by sufferers, carers and those who work within the eating disorders world. I went on to write three more books: Fundamentals: A Guide For Parents, Teachers and Carers on Mental Health and Self-Esteem, with co-author Natasha Devon; a teenage novel, Snap Out Of It, with Donna Iliffe-Pollard; and in 2017, drawing on my knowledge of obsessive compulsive disorder, Hope with OCD with the publisher of this edition, Hammersmith Health Books.
In the seven years since the first edition of Hope with Eating Disorders was published, many things have moved on and changed. The wider public’s understanding of eating disorders and body image has in many ways grown, but at the same time the pressures that society faces are evolving at such a pace that it can be difficult to keep up. The media landscape has altered, with the internet and social media exerting a stronger influence than ever before, and the repercussions of so-called health regimes, such as clean eating and obsessive exercising, are more apparent than ever. I felt it was the right time to bring out a second edition of this book, to reflect those changes and make sure Hope with Eating Disorders remains relevant to as many families coping with this illness as possible.
Furthermore, my own understanding and experience have also grown, thanks to my clients who continue to teach me so much. No two people who walk through my door are the same, and every single one of their experiences has allowed me to grow my knowledge of eating disorders and other mental illnesses, and how they affect individuals and the people caring for them. Writing this second edition gives me the opportunity to pass on all that I have learnt from them to you.
In the chapters that follow, I will try to answer some of the questions that I am frequently asked, and my objective is to give you, the reader, the hope and belief that you have the strength and courage not only to support and guide your child/friend/loved-one through these turbulent waters, but to be able to see them safely to the other side, where they, and indeed everyone closely involved with them, will be able to move forward with their lives. I would like this book to act as a road map not only for those who simply do not know where to turn for help, but also for those who would like to have a clearer understanding of eating disorders in general.
I hope to relieve you of some of the burden, confusion and pain you may be feeling, as you enter the unknown, and to arm you with as much knowledge, guidance and strength as I can, to enable you to continue your journey with courage, trusting in your own personal skills and instinct, just as I did, remembering always that communication is the key, along with unconditional love, perseverance, non-judgement, patience and hope.
This book emphasises that each eating disorder sufferer is individual and unique and there is no ‘right’ or ‘wrong’ path to recovery. My own professional experience demonstrates that each family or support network must take whatever action is right for them; if one option proves ineffective, try another – never buy into the myth that eating disorder sufferers cannot recover, never give up hope and never give up trying.
With hope, perseverance, love and a lot of effort from us all, my family has reached a very positive place. Samantha has recently graduated with a 2:1 in performing arts. She is now engaged to Jay, who I know will continue to love and support her through any difficult times that may lie ahead. And, above all, she is happy and healthy – bubbly, funny and waking with a smile on her face. Her sister, Charlotte, is forging her own path with a loving partner, Callum, and a bright future ahead, and my husband and I can look forward to the next phase in our lives, finally content that our girls are happy and surrounded by love. The experience we have been through with Samantha’s illness has brought us to where we are now: wiser, more appreciative of each other, and with more understanding of others. I never stopped hoping we would one day reach this point, and now I am able to hand that hope on to you. Anything is possible … my family is living proof of that.
Anaby Samantha Crilly
Sitting down to my family dinner,
Everyone staring as I become thinner.
Ana slowly creeping into my thoughts
Telling me to put down my knife and fork.
There’s nothing I can do to make her eat, Mum whispers to Dad,
Ana smiles all smug and glad.
I don’t understand why she won’t eat, Dad mutters to Mum.
Secret is I do, I’m just wrapped around Ana’s thumb.
Feeling my bones rub against the chair
Even through all the layers I wear
Running upstairs and locking my door
Drained and exhausted I collapse on the floor.
Ana, you’re killing me, I can’t let you win.
I take off my top and see my heart beat through my skin.
Mum and Dad banging on the door,
I whisper to Ana I don’t want you anymore –
I’m going to die if you win this war!
You’re nothing without me Ana cries,
Another one of her crazy lies.
Ana will always find a way of creeping into your mind,
Brainwashing you, making you blind
Unable to see what you are doing to your body,
To her it is just an evil hobby.
To those she has touched and lived within,
Please, please, do not let her win.
Hers is a corrupt and vicious mind.
To make yourself happy, it is not her but you, you must find.
Chapter 1
What is an eating disorder?
Disordered eating, and the mentality which fuels it, appears to make no sense at all. After all, what would possess someone to deny themselves the most basic of human needs – a healthy and balanced diet?
Furthermore, it can be difficult to determine where ‘fussiness’ stops and disordered eating begins (and therefore when a cause for concern arises). It can be hard to know if someone is genuinely particular about the foods they like and dislike, or whether this desire to control their food intake has wandered into more dangerous territory. For example, anorexia sufferers can claim suddenly and inexplicably (to those around them) to have embraced vegetarianism or veganism. This could be a ploy to further restrict their food intake. However, it could equally be a perfectly sincere desire to give up certain foods and herald a happy, healthy life as a vegetarian or vegan.
Think of the number of people you know who are either on a diet or declaring that they should embark on one. Equally, I am sure you know many people who are slightly overweight. Statistics show that the Western world is rapidly heading towards widespread obesity – but how do you determine the difference between someone simply enjoying their food or using it as a coping mechanism?
It has been argued that what we would now be quick to brand as ‘eating disorders’ have in fact been around for centuries, and that our modern obsession and the recent meteoric rise in diagnoses arise less out of a growing trend and more out of our desire to label everything. Of course, the same logic could be applied to diabetes and many other illnesses, so this line of reasoning does not quite stand up to scrutiny.
When behaviour surrounding food becomes extreme, it can then be classed as an eating disorder, but often the patterns of thinking which have informed that behaviour have begun much earlier. What’s more, the individual habits of a sufferer might not wholly conform to one recognised disorder but take some traits from several, and because the term ‘eating disorder’ covers a multitude of different abuses of food, they can affect people in a multitude of different ways. Therefore, diagnosis can be very difficult. Completely healthy but naturally slender people are often accused of having an eating disorder, while most of the people with bulimia nervosa caught in a binge/purge cycle have a ‘normal’ body mass index (BMI) or are even slightly overweight. The simple lesson is that, however tempting it might be, it is not possible to make a conclusive diagnosis simply from looking at someone.
Instead, we should be on the alert for the signs of an eating disorder when someone displays anxiety in a situation where food will be (a) present and (b) unavoidable. People can become anxious around food for any number of reasons, but this anxiety can grow to the extent that it dominates every waking thought. It can sometimes even seep into a person’s subconscious while they sleep. I have known sufferers who say they dream about food.
Hannah, who is now recovered from anorexia nervosa and binge eating disorder, looks back:
My eating disorder took over my life. It is all I thought about. Everything I looked at I saw differently e.g. my friends’ meals at school, food packages, people’s bodies… it stopped me from going to events and to school.
Disordered eating goes hand in hand with disordered thinking. This is not just because of the underlying emotional and low self-esteem issues which can infuse the disorder, but because nutrition – or lack of it – affects the delicate balance of chemicals in the brain. Lack of nutrients consequently interrupts reasoned thought. That is exactly why a carer’s attempts to confront the problem may prove utterly ineffectual: the logic that someone without an eating disorder might apply to the situation is usually just not accessible to the sufferer. For instance, most sufferers believe that they are in control of their eating disorder when, in reality, it is often the other way round, as Antalia demonstrates below:
It is weird – I felt like I was in control. I chose what to eat and I chose when to purge. However, after a couple of years with this constant voice urging me to go to the toilet, I realised it was it that controlled me.
Hannah Rushbrooke reiterates this in describing how her eating disorder made her feel:
Weirdly, I grew to feel very safe as my eating disorder developed. I was in this bubble where all the horrible side effects I experienced actually made me feel so happy because I believed they brought me total control; the hunger pains and dizziness told me I was doing it right and I was that bit closer to what I was aiming for… to be that bit thinner and to feel happy and in control. In reality I was anything but in control. It also made me feel very lonely. Very few people understood my disorder so people would get angry and frustrated with me and my behaviours. I grew depressed and hopeless that I’d ever be ‘normal’ again… I wished to have a normal attitude towards food and to not be the ‘sick’ one at school; it was a very difficult journey of recovery.
The carer’s perspective
Eating disorder sufferers cannot simply be told to ‘pull themselves together’, to ‘stop doing that’ or to ‘just eat or not eat’. Many carers and friends can become incredibly frustrated and frightened as they perceive an eating disorder as something the sufferer may choose to inflict upon themselves, of their own volition. This is just not the case. My daughter Samantha’s twin sister, Charlotte, recalls:
What pulled me through was knowing that Sam was still inside, and it was not her talking and acting at that time, it was the eating disorder.
Samantha adds:
We always look at someone with a mental illness as if they are the illness, as if the illness has completely possessed them. It likes to blind you from seeing that your loved one is still there, right in front of you. You must find them within the fog, reconnect with them and stand by their side and help them fight their darkness.
In refusing to eat and exercise in a healthy way, we logically know that eating disorder sufferers are running the risk of causing untold harm to their bodies and minds, both temporarily and in the long term. It is therefore very hard for a carer or friend to understand what might trigger someone to starve and deny themselves nutrients, or to binge and purge on a regular basis, or to consume such large quantities of calories that they become clinically obese.
For any loving parent or carer, used to providing everything their loved one needs, the feelings of frustration, uselessness and despair as their loved one destroys their health and happiness with an eating disorder can be hard to bear. It is not only extremely painful to watch but also incredibly difficult to deal with, affecting not just the sufferer, but also the family as a whole.
Debbie, mother of Hannah, who is now recovered, shares her feelings of frustration at the time:
I was frustrated and impatient. I wanted to shake her and say, ‘please just eat’. I prayed for her to be overweight again. It was better than her being underweight! It took time and patience to learn about anorexia. I was frightened.
While the focus rightly falls on the person with the eating disorder, the needs of their loved ones and other family members and friends can often go inadvertently unacknowledged. I know at first hand how hard it is, and how helpless you can feel as you watch your once happy-go-lucky child, friend or loved one, disappear before your very eyes, as you lose them to the clutches of an eating disorder.
However, I also know what an important and vital role parents, siblings and carers can play in the recovery of someone with an eating disorder. Not only through my own family’s journey, but also that of many families I have met and worked with, I have seen the power of a parent or carer’s love, and the unquestionable lengths they will go to, to help and support their loved ones through to recovery.
Paige, who is in recovery from anorexia nervosa, talks of the support her family have given her through her journey:
It has affected my relationship with my Mum and Dad. They always worry about me and what I’m eating. They also can sometimes get frustrated about what foods I can and can’t eat. Despite these odd moments, we have grown closer as a family. They are both so supportive of me and help me through any tough times I have, and I couldn’t have imagined coping with this without them.
Working through all the information available on eating disorders, and on mental health issues in general, can often leave us utterly baffled and vaguely hysterical – it can seem like a veritable minefield and an impossible all-consuming situation.
Throughout the course of this book, you will discover that as a parent or carer you are not alone. I hope you will learn that some of the mixed thoughts and feelings you and your family may be experiencing, inevitably including concern, worry, sadness, frustration and even resentment and anger at times, are normal and natural; and most importantly, I hope that you will arm yourself with a real understanding of your loved one’s illness and discover some of the most effective ways to help them and the rest of the family towards recovery.
From my own experience, one of the most important things I have learnt, and would like to share with you at this point in the book, is that you cannot apply logic to something illogical, in the same way you cannot apply reason to something unreasonable and you cannot make sense out of something nonsensical. In other words, ‘you simply have to accept what is, to enable you to understand’.
For families, it can be almost unbearable to witness what your loved one is doing, not only to themselves but also the effect their behaviour is having on the wider family and friendship circle. It is not a weakness to admit that caring for someone with an eating disorder can be both maddening and exhausting. It can cause a lot of anxiety and disruption and may lead to a terrifying unravelling of the norms of family life.
However difficult eating disorders are to understand, they are sadly becoming more, rather than less, common. Hospital admissions for eating disorders have gone up by around seven per cent annually since 2005,1 with ‘eating disorders’ now being used as an umbrella term for a wide number of separate – but interlinked – conditions. Anorexia nervosa, bulimia nervosa and over-eating are the most widely known, while others, including orthorexia, where the sufferer pursues an obsessively healthy diet, and compulsive exercise, where the need to burn calories through exercise becomes an obsession, are slowly gaining more understanding and recognition.
Within this book I will explore the above eating disorders as well as some of the lesser known ones, with the aim of giving you, the reader, more of an insight and understanding of these conditions, both individually and how they can link and overlap. It can also be quite common for people with one recognised eating disorder also to show the symptoms of another, or indeed for their issues around food to be interlinked with another mental illness.
What causes an eating disorder?
Is it nature, or nurture, or both? Can we fairly blame popular culture (magazines, advertising, the internet and social media) and the pressures of today’s society? The truth is that for each individual it may be all or none of these things. Every sufferer has a unique set of reasons for their disordered eating, fuelled by their disordered thinking.
So, it is not exactly clear what causes an eating disorder and, although there are various theories surrounding its development, it is currently thought that eating disorders stem from a combination of biological, genetic, cognitive and/or environmental factors acting together or alone as a trigger.
Genetic vulnerability
In the seven years since I wrote the first edition of this book, the evidence that some people’s genes make them more vulnerable than others to an eating disorder has grown. That is not to say that there is a specific ‘eating disorders’ gene that causes the illness, but that a complex interaction between different genes could play a part. Furthermore, certain chemicals in the brain that control hunger, appetite and digestion have been found to be unbalanced in those with eating disorders.2
More studies and research have been done with individuals, siblings, twins and families which appear to show that people born with specific genotypes have a higher risk of developing an eating disorder. Those who have a family member with an eating disorder, are thought to be at least seven times more likely to develop an eating disorder.3
That is not to say that families, and parents in particular, are to blame for eating disorders. In fact, there is NO evidence that particular parenting styles are a direct cause of eating disorders. What is clear though is that loved ones can have a huge role to play in the care and recovery of sufferers and the most successful treatments now actively encourage families to play a part, not least in reminding their loved ones that they are more than just the illness that they are battling.
Psychological factors
Some evidence shows that someone’s personality traits can also play a part. Research into anorexia nervosa and bulimia nervosa, the most well-known eating disorders, has indicated that traits such as perfectionism, obsessive-compulsiveness, negativity and low self-esteem may be involved. Sufferers can often feel, regardless of their many achievements in life, inadequate, flawed and worthless. Developing an eating disorder may be an attempt to try to take control of themselves and their lives, although ironically – as I have said – the eating disorder itself ultimately controls the sufferer rather than the other way around.
A lack of a sense of identity has also been identified as a possible trigger. People who do not have a strong sense of their own self may also be easily influenced by outside forces, and be susceptible to a number of psychological issues including eating disorders. In their own jumbled sense of self, they may look to an eating disorder as a way of defining themselves and giving themselves an identity.
Christine, mother of Ben, who is now in recovery from bulimia nervosa, says:
Even from a very young age I noticed that Ben was very self-conscious and would often shy away from social situations. I think his eating disorder started during early secondary school, where we now know he was questioning his own sexuality. He used the eating disorder as a coping mechanism. However, since he has opened up to us and a couple of his friends as well as the counsellor he was seeing, he is now much happier within himself and feels as though he has found who he truly is. Onwards and upwards.
Socio-cultural influences
The Western beauty ideal of thinness is sometimes impossible to avoid. It permeates the media and also comes in the form of pressure from peers and, increasingly, social media. While many have the kind of personality that can shrug this off or handle the burden it poses, others find it harder to resist the lure of ‘body ideals’ and ‘beauty’.
The most predominant images that are in our culture today suggest that beauty for females is in the form of ‘thin’, and for males, is in the form of ‘muscular’. Some people, possibly without even realising, internalise these ideals, leaving them at a greater risk of developing an eating disorder.
Environmental factors
When we feel overwhelmed, stressed or out of control, we naturally try to find ways to manage these unpleasant and challenging feelings. For some, binge-eating or restricting food can become a way of dealing with the stress or ill feelings. This behaviour may be used as a coping mechanism, and in doing so the person suffering can regain feelings of control and contentment, even if they are just momentary.
Jan, who suffered from anorexia and OFSED (other specified feeding or eating disorder) says:
Now I’m older, although I do not feel the need to starve myself anymore, my eating can be disordered and is greatly dependent on the levels of stress or emotion I am feeling at a particular time.
If someone is vulnerable to an eating disorder, sometimes all it can take is one comment, or a culmination of small events that come together to trigger the development of one. It could be a comment from a classmate, workmate or friend about their weight, or appearance, or just a simple personal criticism, which could trigger the disordered thoughts. It has also been known that bigger, tragic life events, such as shock, loss or abuse, can also trigger an eating disorder.
An eating disorder may develop out of another, seemingly unconnected, illness. In my daughter Samantha’s case, a simple virus which led her to lose some weight was one of the triggers. As a result, she received a lot of compliments which tapped into a pre-existing insecurity she had concerning her body shape. She wanted to continue to lose weight thereafter, but it eventually got out of control. It really was as simple and as complicated as that.
Samantha herself adds:
Looking back, I was not very comfortable in my own skin. When I was complimented for having lost a bit of weight it made me feel good about myself, so I just kept going. It spiralled out of my own control, although at the time I thought I was the one in control.
There is some early evidence that anorexia nervosa, particularly in teenage girls, may be linked to a prior viral or bacterial infection. As I say, much more research needs to be done, but this is definitely a factor to bear in mind.
Furthermore, with young people, there is some evidence to suggest that girls who reach sexual maturity ahead of their friends and peers are at an increased risk of developing an eating disorder. They, and the people around them, may wrongly interpret their new curves as ‘being overweight’; this can cause feelings of shame and being uncomfortable within themselves because they no longer look like their peers who may still have childlike bodies.
Dieting
Dieting may not be the cause of an eating disorder, but it can often be a precursor. It can be a way for someone to start the process of control, counting calories, limiting types and amounts of food, and watching the numbers drop on the scales. Focusing on dieting, food and weight loss can be an escape from true emotions and issues.
Dieting can be a vulnerable time for anyone, but particular attention needs to be paid to teenagers who are trying to lose weight. At this stage in life, not only are they particularly at risk from the pressures of society, it can also be a time of great change, both physically and psychologically, leaving them more exposed to the dangers of extreme dieting. If, like Samantha, they also receive positive comments on their weight loss, this can inadvertently push the more vulnerable to make the dangerous step from ‘diet’ to ‘disorder’.
The National Eating Disorders Association in America reports that 35 per cent of ‘normal dieters’ progress to uncontrolled dieting and 20 to 25 per cent of those individuals progress to an eating disorder.4
Other mental illnesses
Research has shown that if someone is suffering from another mental illness, such as depression, anxiety or obsessive-compulsive disorder, they could be more likely to develop an eating disorder alongside it. If more than one disorder is present at one time, the symptoms of each can significantly overlap, making the disorders intertwined and thereby causing them to feed on and exacerbate each other.
Jobs and activities
Being part of sports teams and artistic groups can put someone at an increased risk. This can also be true for members of any community that is motivated by appearance, including athletes, actors, dancers, models and television personalities. This could be due to the element of competition involved, or individuals in these communities could inadvertently contribute to eating disorders by encouraging weight loss and putting too much emphasis on appearance and weight.
Having discussed all the above possible causes, it would be worth noting that some eating disorder sufferers have no reasoning at all as to why and how their disordered thoughts and behaviour began, as Antalia, a bulimia sufferer for eight years explains below:
I was16 and I remember I was revising for my GCSEs, but I wasn’t under a lot of stress at all. I don’t know why I did it really. I was on holiday with my family and my sister and we were inside, watching something on her laptop. We ate some crisps and had a diet coke each and I remember going to the toilet and trying it. I realised then how easy it was, and I suppose it was from then that it all began.
Hope with eating disorders
I know the above paints a pretty bleak picture, but I cannot reiterate enough that from my own experience, both personally and professionally, contrary to popular belief, full and lasting recovery from an eating disorder is possible, remembering always that as every individual sufferer is unique, so is their experience and in turn their recovery.
The most common question I am asked by concerned friends and relatives of eating disorder sufferers is simply ‘What can I do?’ The most crucial step is to develop a better understanding of eating disorders – not just the physical symptoms, but the state of mind which infuses them. Furthermore, the earlier you can both recognise the signs for concern and in turn act on them, the quicker your loved one may be able to receive help, stopping the illness from becoming hard-wired and taking over his/her life.
If you notice something amiss, try not to adopt a ‘wait and see’ approach, remembering that early intervention can be key to a quicker and more effective recovery. Even if they are not ready to seek help, acknowledging your loved one’s struggle and showing that you are there for them can be the first crucial step on their journey to recovery.
Amara says of her experience with her daughter:
My daughter started showing the classic signs of anorexia aged 12. Thankfully I did already know a little bit on the subject and was able to spot these signs pretty early. I took Amaya straight to the GP where she was put on a CAMHS [Child & Adolescent Mental Health Services] waiting list. In the meantime (as I did not want to wait for a space to become available), I took her to a private therapist who started working with her straight away. Thankfully now, the eating disorder is history.
One thing I do not want carers to do is feel guilty. It is all too easy for the people around eating disorder sufferers to blame themselves. Not only is this blame often misplaced, it can actually delay recovery, placing an obstacle in the way of your loved one’s journey back to health. Guilt is a destructive and ultimately pointless emotion, and one I hope to rid you of.
Fiona, mother of Katie who is now recovered from anorexia nervosa, tells us of her feelings of guilt:
When my daughter was diagnosed I had terrible feelings of guilt as I blamed myself. I am overweight and wanted to join a slimming club and Katie came along with me for support and to lose about half a stone herself. Although I now know it was not the sole cause, at the time of her diagnosis and for about a year I felt it was, and also my fault for being an overweight parent.
All carers – whether they be family, friends, colleagues or professionals – if possible, need to work together as a team, not only to support the sufferer but each other, too. Any chink in your armour can be exploited by an eating disorder, which is why it is crucial that carers must communicate and stand united together.
Sadly, there is no miracle cure for an eating disorder. Nor can you, as a carer, simply wave a magic wand to make your loved one better. You can give all the love, support and understanding in the world, but ultimately the only person that can really make that change is the sufferer. The greatest thing you can do is stay right beside them as they take the difficult steps on that journey.
Eating disorders can be contradictory and confusing, making it difficult to see a clear path ahead. No two cases are the same, which makes every treatment journey unique to the sufferer and their carers. I hope this book will give you the clarity you need to provide consistent and coherent support to both the sufferer themselves and their wider family and friends. It is said that ‘knowledge is power’ and I hope that by passing on many of the lessons I have learnt, you will feel armed to deal with the journey ahead.
One of the most dangerous and depressing myths surrounding eating disorders is that they are a life sentence. It is distressing to see people ‘managing’ their conditions, learning to cope with them on a day-by-day basis, with both the sufferer and their carers resigned to the fact that this is as good as it gets. Although for some, being able to manage their condition may be a huge achievement in itself, others will want to rid themselves of the illness completely. This can be possible. Although eating disorders are very serious and very dangerous, the statistics are overwhelmingly stacked in favour of recovery.5 I hope to help you find the light at the end of the dark tunnel, just as my family did.
Often it will feel like you are getting nowhere. Sometimes the situation may seem to get worse. But please do not give up. Even then, your love and support will be setting down foundations for recovery in the future. With communication, perseverance, positive thinking, love and, most importantly, hope, there is always a way through the maze of eating disorders and a path back to health and happiness for both the sufferer and their carers.
Hope with Eating Disorders will show you that full and lasting recovery is possible, and that there is no right or wrong way to recover; just as a person’s eating disorder is unique to them, so is their recovery. This book will also hopefully allow you to see how you and your loved one can free yourselves from the prison of eating disorders and enjoy the liberty of a life which is not dictated by food once more.
Myths and truths
Myth: Eating disorders are just an extreme diet.
Truth: Although people who diet are more likely to develop an eating disorder, it is too simplistic to brush them off as simply an extreme diet. Eating disorders are a very serious illness, characterised by considerable psychological impairment which may progress to the point of causing wide-ranging and life-threatening medical issues. They are not a lifestyle choice or simply a diet that has merely gone too far.
Myth: Eating disorders are all about attention-seeking.
Truth: People with eating disorders are not simply seeking attention. By contrast, sufferers may go to extraordinary lengths to hide or deny their behaviour, or they may not even recognise that there is anything wrong. The actual causes of an eating disorder are complex and due to a whole range of factors.
Myth: Families are to blame for eating disorders.
Truth: This is an historic misconception. While there is evidence that eating disorders may have a genetic link, and people who have family members with an eating disorder may be at higher risk of developing one themselves, the link is no more significant than, say, where genetics have a role in cancer or heart disease. Nowadays it is recognised that families play a crucial part in the recovery of eating disorder sufferers.
Myth: Eating disorders only affect teenage girls.
