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:
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:
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:
Some areas where words get twisted (share your experience of any or all!):
Early Signs and Symptoms
About fat and thin
Saying Something About It
Meal times at home
Weighing (toss the scales!)
Body image (do I look fat?)
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:
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):
Example (Relationships – with friends):
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.”
Email your examples of twisted language to email@example.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!