TwistED is out, and ED says U said is in.
Thank you to the many respondents who have shared thoughts on the concept and title for the upcoming book on understanding the language of eating disorders. Your insights are appreciated. TwistED was a working title and your heartfelt and evidence-from-experience observations have pointed out an ambiguity – we were referring to the Eating Disorder twisting the language or intention of the spoken word, but you could see another meaning – that of the person with the eating disorder feeling ‘twisted’.
Just goes to show how easy it is for language to be misconstrued by the eating disorder – both co-author Cate Sangster and I have lived with Anorexia – I’m probably even in the veteran class, and yet, alas, the deceptive illness can still catch us out!
So we have taken your important views on board, and put forward ED says U said. Let us know if you agree this title encapsulates the essence of the eating disorder’s impact on our interpretation and understanding of the spoken word.
ED says U said is for people of all ages and of all eating disorder stages. It is for people who have suffered or are suffering the illness, and for families, partners and friends who are caring for someone with Anorexia, Bulimia or Binge Eating Disorder. It is also going to be a handy book for clinicians, nurses and teachers.
Importantly, you are invited to contribute to the CONTENT of ED says U said with instances where you have felt misunderstood – when your illness was developing, during treatment and recovery – in communicating with your family, clinicians and friends. Or in the case of a carer or friend – when you felt misunderstood, even though you thought you were saying the right thing and saying it clearly as well. We will then ask an expert to interpret what was said, to explain to the carer that while their intention is good, the impact on the sufferer is often loaded with ED triggers. Advice will be given on how to re-word what is said, so that you feel safe and secure and do not feel threatened.
I wish to acknowledge these following contributions:
“M” considered the title TwistED unsuitable but says the book outline is amazingly complete! You’ve selected many if not all the points at which there are “MISINTERPRETATIONS” between parents and people with EDs and/or the entire outside world.
“S” is 25, and has lived with anorexia for 11 years and bulimia for eight. She says: The most concerning thing for me is the widespread association between dieting and body image with eating disorders. For me, it has NEVER been about society’s beauty standards or even weight; it’s about subduing human need, pushing beyond limits, and being “strong”. I worry that not only popular media and the public but also a number of advocacy organizations (at least here in the US) have hopelessly confounded dieting and self-esteem issues with clinical anorexia/bulimia.
“L” writes: Looking forward to reading the finished product! Will contribute when able but working on being a better listener for my daughter’s sake! Please keep me in the loop. Still haven’t figured out how to talk to my daughter after all these years! Hoping someday this (illness) will be behind us all!
“N” did not like the word TwistED but says: The book concept is fantastic and well needed and to be honest some doctors and nurses have no clue themselves. So it is no wonder parents have no education. All my parents were told was that it was my fault treatment wasn’t working because I wasn’t trying hard enough. I was isolated, shouted at and made to feel So Bad. Hence my eating disorder worsened over a course of 12 years. The medical profession have a lot to answer too! I will post soon. Hope this helps and keep up the good work! Can you make this work for adults as well? We suffer too! Thanks.
“K” says this book will be useful for parents because she is forever trying to encourage close family members to be more careful of comments to her daughter: I’m trying to educate them that the most innocent remarks can be major triggers. My daughter is now 2.5 years in having anorexia, and is at a good stage of recovery, but is incredibly sensitive to remarks.
The content for ED says U said is what we are really working on now, and invite your contribution!
This a great opportunity for you to contribute examples of things people have said to you, or you have said to them, and been misinterpreted, misunderstood. This is a chance for you to get your message out and share your evidence from experience.
* Each example needs to be only about 100 words. Write down what was said, what your thoughts were, and send the examples in. An expert will ‘interpret’ the meaning, to help educate readers of this book in understanding the language of ‘ED’. Start writing:-) Email your examples of ED says U said to email@example.com before March 30. We look forward to your participation.