We all need to love our body but when we have an eating disorder this is not enough. We need to understand the language too. The language in our brain. An eating disorder is not a choice or something that can be switched off with a throwaway line; it is a biologically-based brain disorder that, for sufferers of Anorexia Nervosa, has the highest death rate of any psychiatric illness.
Sadly, many children, adolescents and adults with eating disorders give up trying to be understood in a world largely obsessed with body image and ‘surface stuff’ and retreat into a world of attempted denial, silence and despair. I did exactly this – for more than twenty years.
Thankfully I did not give up entirely and eventually – with much help and love – regained ‘me’. Since emerging into the light six years ago, life has been amazing. Besides avidly following the wonderful evidence-based science that is around today (understanding the illness is liberating, enabling me to soar in personal growth) I have found that in sharing my story, I give others with an eating disorder hope and permission to share their story. In giving hope to them, they in turn inspire me. We re-assure and help each other. This happens effortlessly and compassionately.
Why? Because we understand each other. We know what it is like on the inside of this horrible, debilitating, manipulating, sneaky illness.
But many people on the outside looking in – carers, family members, friends and ‘everyone else’ – often don’t understand. They try to but feel confused, hurt, angry, frustrated, every emotion you can think of. The eating disorder is a master of misinterpretation – for the sufferer and the carer, and the general community.
The eating disorder causes us to say and do one thing when we want to say and do another. We are misunderstood, taken the wrong way, and are screaming inside! And as the years slip by, our true identity is hard for others to see.
ED says U said – Understanding the Language of Eating Disorders, to be released in the UK and USA in early in 2013 by Jessica Kingsley Publishers, will help break down the barriers.
I am writing this book with another ED traveller, Cate Sangster.
We are very grateful for your contributed dialogues and we are busily working on the manuscript.
‘Sufferers and carers need to understand each other’
A 27-year old eating disorder sufferer with ED-NOS (restrictive spectrum) in contributing to E says U Said, adds this remarkable insight:
‘I have struggled with eating disorders in some shape or form for around two decades now. It has taken me a very long time not to take comments so personally, which I have in the past extrapolated and added my own meanings to- based on my own hidden agenda. Self-hatred. I think I finally understand how hard it must be for loved ones on the “other side”. They must feel like they’re walking on thin ice trying to say the right thing. I think sufferers (myself included) need to acknowledge that whatever we read into these “comments” reflects back on how we feel about ourselves. Until we change our perspectives of ourselves, we will only hear what we want to hear if it can become a weapon to beat ourselves up with. Seeking validation and approval from others (e.g. “you’re not fat”) is like filling up a glass of water with a hole in the bottom. We’re never satisfied until we can validate ourselves, if we’re over-reliant on what others think to make us feel secure in ourselves. I don’t think it matters how people re-phrase things sometimes- someone with a raging eating disorder and a negative mindset is going to skew what was said to fit their said agenda of self-hatred, no matter how much care is taken to “say the right thing”. So I think bringing about change in communications and understanding works both ways. Sufferers and carers need to understand each other. It’s not possible to tell everyone you’re struggling with an eating disorder.
‘It’s the innocent comments coming from people who don’t know any better that do the most damage- when it’s not possible to give them chapter and verse of what’s appropriate and what isn’t. In these cases, we need to equip ourselves with support systems to bounce things off, and decent coping skills. Learning to self-validate has been a big lesson for me. I have to rely on myself a lot. I’m not sure how effective those “love your body” campaigns are in preventing eating disorders, because the issues that drive disordered eating are more complex. Telling people to “love their bodies” trivialises the complexities of disordered eating and I think it exacerbates the stigmatisation of sufferers being “transparent” and “image obsessed”, wanting to grace the covers of Vogue and what have you. There are a lot of contradictory messages in society, and people with eating disorders tend to have boundary issues in relationships. This increases the likelihood that we will misinterpret what we hear, because we don’t challenge it or reinforce those boundaries that should have been there to begin with. We suffer in silence because of something that’s been said to us by whoever, but we don’t speak up about it. We practically invite people to invade our boundaries because of our innate vulnerability and lack of self-assurance. People pick up on it. Rarely do you hear someone speak up and say (when considerable offence and invasion of boundaries has occurred), “it’s NOT okay for you to comment on x- it’s none of your business”.
Final Call for Conversations
Help us provide carers and friends with an insight into what their loved ones are thinking, and how to prevent the release of unintended triggers. ED says U said: Understanding the Language of Eating Disorders will present twitter-style conversations between eating disorder sufferers and their loved ones – and experts will explain how the communication breakdown for each conversation occurred and it can be averted.
Examples of conversations:
Parent: Oh good girl, you’re eating your dinner before I even had to remind you it’s meal time.
Daughter: What have I done! I’m so weak and pathetic! Stop eating RIGHT NOW!
Parent (at restaurant): Oh c’mon honey, hurry up and choose. Everyone’s waiting for you.
Daughter: Well thanks a lot! Now I can’t even look at the menu. There’s nothing on here I can eat. There are too many choices. I don’t want to be here and now everyone’s looking at me. I want to go home!
Contribute your voice and help the world understand the language of eating disorders. Email your examples to email@example.com by April 15, 2012. The only requirement is that each account be limited to about 100 words. All submissions published will be anonymous to maintain the privacy of all concerned. For more information visit here.