You Just Don’t Get It

You Just Don’t Get It

ED says U said - a chance to help others Understand the Language of Eating Disorders.

ED says U said - a chance to help others Understand the Language of Eating Disorders.

Six years into freedom, I remain gob-smacked at the ability of an eating disorder to twist and turn words. Not only the spoken word but also the silent words that for decades raced incessantly, like champion dodgem cars, around in my mind.

Say one word and my eating disorder would grab and magnify it to the point where confusion reigned and common sense was nowhere in sight. One word could trigger a thousand thoughts.

An outsider would never dream of the connection. They would scratch their head, wondering what they had said, as a cloud swept over my face, my sunny nature swallowed up by the Eating Disorder. Babbling one moment, silent the next.

I’m talking about the long period, from my early twenties onwards, when aware I was often making decisions that were definitely not in my best interests, and could not understand why. I had lived with ‘ED’ since age 11 and had no idea what life could be like without the tormenting thoughts.  Frankly, I was afraid to find out.

The torment did not relate only to food. It related to relationships. And feeling safe, stable and secure.

Life was a rollercoaster. I had a hole within but had no idea how to fill it.

It was too scary to face.

Easier to live on the edge of life. Chaos was a great partner for ‘ED’ and I had plenty of it.

I moved house often, sometimes three times in a year.

I was in and out of relationships that were attracted to ‘ED’s characteristics rather than mine. One of my sons, aged 14 at the time, said quietly one night: ‘Mum, you are ‘as bad’ (hurting yourself as much) as those abused women you write about in the newspaper.’ He was right. I could see that. But still I could not break the spell, the power of ‘ED.

Each time I managed to get on the verge of a safe place – a place where I could be secure and have plenty of support while I faced the gaping hole in my soul – I would take fright and make life difficult for myself – chaos was something I knew about; I yearned for peace within but was scared of it – afraid of the stillness, the ‘nothing’ but me and ‘it’. So I would return to a relationship that my treatment team, children and friends had encouraged me for months to leave. I would be aware I was not behaving in my best interests, that I was letting my children down (again), that I was hurting the feelings of a nice man who I knew would be ‘safe’ and who declared love for me despite my illness,  that I was making life really hard for myself – and,yes, I would go headlong into fresh chaos and do it anyway.

Eating disorder and chaos; they go together perfectly.

I would sell my house and go into new debt. One time I even bought a house back, that I had sold only three years before – paying almost double. Telling myself I needed to buy this house back, to fix up a mistake in the past. And then my road to peace would become clear. So fuddled was my thinking. ‘ED’ had a grand time playing with thoughts and emotions.

Emotions? What were they? I had no idea!

Goodness, ‘ED’ had been bossing me around since childhood. Now I was a middle-aged woman! Emotions and feelings were a foreign language to be sure. I was completely out of touch with both. At age 47, I discovered they were the key to beating ‘ED’.

The moment of enlightenment occurred when my patient therapist suggested separating ‘ED’s thoughts from mine.  I could identify the thoughts, but catching and de-fusing them before those dodgem cars roared out of the pits was a huge challenge.

‘Focus on your feelings and food will take care of itself,’ my therapist said. She was right. Took eight years but the day came when I could eat normally, peace reigned in my heart, I stopped moving house just to ‘have a new start’, I embraced stability, security and safety, I became my own best friend.

No more dodgem car thoughts racing around in my head. No more confusion, no more chaos. Everyone who loved me heaved a huge sigh of relief.

Together with co-author Cate Sangster, I am writing ‘ED says U said’, a guide to help others understand the language of eating disorders. Cate Sangster and I know the language well and we want your input too.

Make your experience count

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.

Example conversations:

  1. Parent: Oh good girl, you’re eating your dinner before I even had to remind you it’s meal time.
  2. Daughter: What have I done! I’m so weak and pathetic! Stop eating RIGHT NOW!
  1. Parent: I know you’ve been lying to me and exercising in your room when the doctor has told you not to. Why do you do this when you know it hurts you?
  2. Son: She’s been spying on me and now she hates me. I have to be more careful not to get caught.
  1. Parent (at restaurant): Oh c’mon honey, hurry up and choose. Everyone’s waiting for you.
  2. 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!

We need your help

For this book to be as universally relevant as possible we want to include everyone’s experiences. Send in your accounts of where what you said or heard was misinterpreted and you don’t know why. Or if you do know why, include that too.

Submissions are invited from everyone – friends, sisters, husbands, mothers, grandfathers, daughters AND from eating disorder sufferers. Everyone’s experiences, contributions and perspectives are welcome and vital. 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.

Contribute your voice and help the world understand the language of eating disorders. Email your examples to by March 30, 2012.

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