ED says U said – untwisting eating disorder talk

ED says U said – untwisting eating disorder talk

Eating disorders have pretty much a language of their own. We say one thing and it is heard and interpreted as another. This can be hard to accept when our intention is noble. Something happens on the way from the speaker to the listener. The sense of the words can be twisted into many meanings, depending on whether we are a parent, partner, sibling or friend, or whether we are the one with an eating disorder.

It makes all of us cranky, because even when we take special care to explain ourselves clearly, our words can achieve totally the opposite effect.

We want to help and we hurt.

We want to encourage, and we thwart.

We want to develop a trusting relationship, and we sabotage it.

As survivors of eating disorders, Cate Sangster  and I know what it is like to be misunderstood and alienated – now out of the ED wilderness, we can appreciate that a lot of what we heard, was not the intention of what others said. And a lot of what we said, was not said in the way we intended either.

Sadly, for some of us, irreparable damage is done – relationships lost forever – because the language of the eating disorder has been misunderstood. The many poignant stories resulting from misinterpretation of eating disorder language have inspired us to do something about it, and Jessica Kingsley Publishers, London, agree. So much so they have offered a contract for TwistED ,(updated titled: ED says U said), a book that will take the spin out of, untwist, eating disorder talk.

TwistED (updated titled: ED says U said) will be both fun and educational. We want everyone of every age to enjoy the read and get something from it. We want to clear the eating disorder fog – for people like Aunt Sally:

Aunt Sally sees niece Dora three months after re-feeding began for treatment of Anorexia and says, encouragingly:  “Dora, I’m delighted to see you looking SO well.”

Aunt Sally expects Dora of old will respond with a grateful hug. But Dora responds with a scowl, and runs to her bedroom, slamming the door.

Aunt Sally feels totally perplexed. ‘What have I said wrong?’

(This is an example of situations you will read in TwistED (updated titled: ED says U said) with the addition of a third dimension – an explanation to unravel the language).

TwistED (updated titled: ED says U said) will provide tips on how to avoid pitfalls when talking about body image, food and fitness – because by avoiding such pitfalls, we help to prevent and disarm eating disorder thoughts and behaviours.

Your Experience Counts
Your experience can help others know what to say, and what not to say, and it is best for us all to take notice. We don’t always know who has an eating disorder, or who is vulnerable to an eating disorder. Hopefully, by being more aware, we can defuse some of those unseen triggers before they ‘go off’. When aware an eating disorder has developed, care with language becomes even more crucial – some parents feel like they are tiptoeing on eggshells, wondering if they are saying the right thing. A mother with a 16-year-old daughter describes the challenge:

Understanding the language of anorexia – has felt at times like I am talking a different version of English with my daughter – when I try to provide positive feedback, it is read as failure for her or that she is fat. Trying to ascertain when she says a particular food is awful, that she is giving me clues as to what she actually wants me to make her eat etc. is a challenge.

TwistED (updated titled: ED says U said) will be helpful for this mother, in a humorous, story telling way.

Besides parents, many other people, including many doctors and nurses, have difficulty understanding the behaviour and language expression of someone with an eating disorder. TwistED (updated titled: ED says U said) will unravel the confusion and provide insights – in family and relationship situations, and in study, work and clinical environments. It will suggest what to say to avoid the pitfalls.

We often want to help when an eating disorder develops in a friend, relative or colleague but don’t know what to do or say.

When I had Anorexia, I really wanted to say to an aunt: ‘please don’t mention that I look ‘well’ because this triggers my eating disorder thoughts’ but I didn’t know how to do say so tactfully, and did not want to bring attention to myself, so what did I do? I started to avoid that aunt. What did my mother think? She thought I was being rude. And on it goes …
TwistED (updated titled: ED says U said) will help avoid such relationship-spoiler moments.

TwistED (updated titled: ED says U said) will help allay fear of the unknown, and explain in a fun way the emotional chaos that can sweep in like a storm when an eating disorder comes into a life, into a family home. We seek your suggestions in three areas:

  1. Advice for recovery guides – families, partners, friends
  2. Advice for people with an eating disorder, working towards recovery
  3. Things said that we hope never to hear again

We all remember things that have been said – often because of the totally unexpected reaction. There are language booby-traps with all eating disorders – including Anorexia Nervosa, Bulimia Nervosa and Binge Eating Disorder. Each has its challenges.

This is your chance to help explain their language. All contributions will remain anonymous.

This is how TwistED (updated titled: ED says U said) works:

Recovery Guides

In this section, families, partners and friends share experiences of situations when a statement, comment or suggestion has been wildly misinterpreted by their loved one. Each anecdote is presented in three parts:

  1. What the Recovery Guide or Carer  said. (Tell us what you said …)
  2. How  the eating disorder twisted (heard and misinterpreted) the words. (Tell us how the person re-acted …)
  3. Examples of an untwisted way to say what you want to say will be provided by survivors and eating disorder experts.

Some areas where words get twisted (share your experience of any or all!): 

Early Signs and Symptoms

About fat and thin

About exercise

Saying Something About It

Meal times at home

Eating out

Weighing (toss the scales!)

Body image (do I look fat?)




Building Trust



  1. Parent: Oh good girl, you’re eating your dinner before I even had to remind you it’s meal time.
  2. Daughter OMG what have I done! I’m so weak and pathetic! Stop eating RIGHT NOW!
  3. Untwisted: Say nothing when you notice your daughter is eating. When she is finished congratulate her quietly: “Well done. You were really brave. I’m so proud of you. Now let’s do the dishes together/watch TV together. …”


  1. Parent: I know you’ve been lying to me and exercising in your room when the doctor has told you not to. Why can’t you just behave yourself?
  2. Son: She’s been spying on me and now she hates me. I have to be more careful in the future not get caught.
  3. Untwisted: I know that the urge to exercise is extreme, but I also know you are strong enough to do this. Let’s talk to your therapist about ways I can support you better.


  1. Parent (at restaurant): Hurry up and choose. Everyone’s waiting for you.
  2. Daughter: 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!
  3. Untwisted: Have a code worked out beforehand so your child can let you know if they need assistance (such as you making the choice for them) without drawing attention to themselves.

People with Eating Disorders

This is a chance for people who have recovered or are recovering from an eating disorder to have a say. Anecdotes identify words said by recovery guides – not intending to be hurtful but having a devastating effect. Each anecdote is presented in three parts:

  1. What the Recovery Guide or Carer said.
  2. How the eating disorder twisted those words (what you heard or are now thinking).
  3. Experts will provide advice on how to interpret these words in an untwisted, less black and white way.

Examples are many,  but to get you started, share your experience in relation to:

Triggers at school

Triggers in the work place

Triggers in sport

Triggers at home

Eating with the family

Eating out with friends

Eating at school and college

Eating in the work place

Relationships – with parents

Relationships – with siblings

Relationships – with friends

Relationships – with partner

Relationships – at work

Shopping for clothes

Shopping for food

Media – diets, exercise, body image

Me or my Eating Disorder – which is which – sorting the thoughts

Example (Triggers at Home):

  1. Grandma: It’s great to see you looking so much better now.
  2. I felt good until you said that. Now I feel enormous and wish I hadn’t eaten lunch; I will have to go on a 10km run.
  3. Untwisted: All she’s saying is that I have the sparkle back in my eyes.

Example (Relationships – with friends):

  1. Friend: Don’t worry about your jeans not fitting – have you seen me in my jeans lately? And you really did need to gain some weight anyway.
  2. You’re making me feel terrible. And is it that obvious that I am getting fat?
  3. Untwisted: She is really trying to help me to see that I have not suddenly put on 25kg. And that I am winning my battle.

Not again, please

One of the best defences when experiencing or caring for someone with an eating disorder is to keep a perspective and sense of humour. This blooper section presents comments said to both recovery guides and people with eating disorders, in a light hearted, black humour way. Contributions will raise awareness that despite good intentions, some comments are not productive, right or constructive; and that, for people with eating disorders, not all comments are meant to be taken literally or to heart.
Mental Health Nurse to Doctor:  “I’d strongly advise against discharging this lady because she is at high risk of re-feeding syndrome and should be supported in an inpatient setting while she starts eating.”

Doctor:  “I’m confident there’s no risk of re-feeding syndrome as she has no plans to start eating again.”

  • Thirty-year-old doctor, in early stages of recovery from Anorexia Nervosa, agrees to speak at opening of new eating disorder clinic to aid promotion.
  • TV Presenter: Doesn’t she look great, everyone.  I hardly recognized her from the skeleton I met three months ago.
  • Friend to ED fighter’s 10-y-o daughter: “Tell mummy if she doesn’t eat then you won’t eat either.”

Email your examples of twisted language to june@junealexander.com

Part of the fun is to keep your examples short – no more than 50 words.  Closing date for contributions will be March 30, 2012. Jot the examples down as you think of them and send them in. I’ll keep you posted on progress. Come for the ride!

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