ever feel like no-one understands *YOU*?

Well, soon there will be a book for you to give to your family, friends and anyone else you think could do with a bit of translation-education.

Bloggers and eating disorder survivors Cate Sangster and June Alexander are currently working on a book to breakdown the language barrier that often exists between ED fighters and their family and friends. This can range from simple comments like "you look well" to seemingly downright thoughtless ones like "stop trying to get attention and just eat your dinner".

More often than not the family and friends of those affected by eating disorders have NO IDEA WHAT HAS HIT THEM - and really need a hand to get inside the mind of their loved one in order to avoid saying triggering and hurtful things.

This book will fill that need. It will help family and friends to understand the language of eating disorders - and therefore better understand how to help YOU on your journey to full recovery. And it will also help break down that stigma that you are doing this on purpose, or just to 'get them back' or to 'be difficult'.

SO HOW CAN YOU HELP?
Cate and June are looking for suggestions of experiences you have had where someone has said something to you and couldn't understand why you were upset by it. But also they would love suggestions from your family and friends as well. Get them to add their voices with suggestions of comments they have made where you have reacted unexpectedly so they can help fill in those blanks too.

And spread the word too. Cate has two buttons on her side bar (see below). Go grab the codes and put them on your blog. One button is to let people know about the book, the other is to let the world know that you have been a part of this valuable project too!!

NEXT STEP??

Go visit Cate's blog for the funny, and June's blog for the facts, including the email address of where to send your suggestions.

MAKE YOUR VOICE HEARD. THIS IS BOOK WILL HELP PEOPLE TO BETTER UNDERSTAND. 

To paraphrase Abraham Lincoln:

"I don't understand ED. I must get to know him better"

Mental Illness: Why do we need an umbrella term anyway?

This post has been prompted by a post from Laura's Soap Box on the term "brain disorder"

It's not a rant. Really it's not (I know it has been in the past) - but this time it's more just thinking aloud.

One of Laura's responses to a comment in defence of the term was that fear of the term should be unfounded as if we would referred to diabetes as a 'pancreatic disorder' we wouldn't automatically attribute the same concerns to that label as we do to 'brain disorder'.

But I don't see that argument as fair.

If you walked into any shopping mall and conducted a quick vox pop on "What does the term brain disorder (or the currently official umbrella term: mental illness) mean to you?" I guarantee you the answers would all follow the same line:
someone mental
someone crazy
someone who walks down the street talking to people who aren't there
someone psychotic
someone who snaps and kills their neighbours with a sharpened fork

...get the picture.

But my big question today is - why do we need this umbrella term at all? Why do eating disorder sufferers need to face the stigma of being associated with psychotic and dangerous people. Don't we have enough stigma being vain little sillys who just want to look good in our skinny jeans??

Lung cancer, emphysema and cystic fibrosis all severely affect the lungs. But we don't lump them all together as lung disorders. So why do we do this with depression, anxiety, eating disorders, schizophrenia, BPD, PTSD etc etc. They all have different presentations. Yes, I suffer from anxiety and an eating disorder. But it didn't kill me to say both those things separately - so saving time surely can't be the reason.

And if the reason is to better inform the public - that ain't working either!

Any way - just my thoughts - I would be very interested to hear your thoughts. Do you like the term? Do you, like me find that it is too fraught with stigma to be useful?

why I hate the term 'mental illness'

One word; stigma

I had a great conversation with my dietician the other day and it clarified a few things for me. I told my dietician that she (meaning the ED professional community) needs to come up with a better term than 'mental illness'. The stigma attached to that terminology is too damaging. It really makes no difference what it actually describes - the general community associate the term with psychotic behaviour. It immediately conjures up an image of someone who is a danger to the community and therefore cannot be trusted. True that someone with an ED is inherently (and seriously) a danger to themselves - but I resent the implication that I must be 'mental' to have a 'mental illness'.

My dietician made the comment 'but you don't have to be the one to fix it'. But quite frankly I think I do. I have a voice and I have experience that I think is worth something.

And I find it frustrating when people who are not personally affected by anorexia tell me how I should feel about the term. I find it condescendingly paternalistic that I should be told to accept a label simply because some professional came up with it. It is like an explorer naming a country without asking the current inhabitants what the country is actually called.

It may be a perfectly exactly descriptive name - but the stigma is too damaging. And stigma is everything. It is what the uninformed use as fact to pass judgement. The media encourage it and the masses repeat it and retweet it.

I'm not mental, or even unintelligent. I refuse to be categorised, pigeon-holed and labelled. I don't like the name someone else chose for my country. So I'm not going to call it that.

ANZAED conference

I'm going...

eeek...

my local library is the best

well, no actually it's not all that great. But of the 4 books (yes, you can count them all on one hand) about eating disorders these were two of them:

seriously not bad for a library with such limited resources - I'm actually pretty impressed :)

Advice for mothers living with eating disorders

I was so thrilled today to receive an email from the inspirational author of A Girl Called Tim - June Alexander (see my post about her book here). She wrote to let me know about a article she had written on her website containing some fabulous advice from international eating disorder specialists - and was advice specifically given to help mothers living with eating disorders while trying to care for their children.

Thank you so much June - I am so grateful to you for taking the time :)

Please visit June's article here ('mothers with eating disorders') to read all the helpful suggestions for mums.

**Edited 6 Aug 2011 - Now that June has a blog she has updated this article as a blog post found here

a little too personal

I'm really on a roll at the moment. I reeeeeeally want recovery - now!

So I found some courage over the weekend and asked the advice of someone I trust. I wanted her opinion on how to get my recovery moving faster.

And the answer I got was not what I was expecting at all.

I've met some wonderful people online just recently - people who know so much more than me; people who have seen it all; and people who have lived through it all. And the wonderful woman I chose to pose this question to is from the 'people who have lived through it all' camp. So I not only trust her, but she is one of the few people I *can't* say to "but you just don't understand".

So when I got the response, I was competely taken aback - but knew there must have been a very good reason for it. And when I asked her - telling her that I found the response upsetting because it was so personal - her reply was:  

yes - that's the only way to deal with this - to meet the challenge "head on".

So I crawled under the coffee table and waited for the world to swallow me up.

But you know what? 

I can do some really good thinking under there when I need to. After all, like I said, she *really* understands what I'm going through - so I knew that she was right, I just needed to understand why she was right.

But I worked it out...

Nothing must be allowed to stand in the way of my recovery.
Nothing must be used as an excuse.
Nothing is too uncomfortable, too time consuming, too embarrassing or too childish.
No excuses are acceptable.
Do what needs to be done and that's the bottom line.
I must not minimise this illness just because it makes me feel incompetent - that is ED at work.
That is ED's MO.
That is how ED is trying to beat me.

and I won't let that happen.

food challenges

image

I read a really interesting article* the other day from the Journal of the American Dietetic Association:

Food Choice and Diet Variety in Weight-Restored Patients with Anorexia Nervosa

(sorry this is the abstract only)**

The study found that weight-restored (as opposed to recovered) anorexic patients who maintained a diet which included both a wide variety of foods and also highly palatable foods, were significantly less likey to relapse than those who ate only limited number of less palatable foods.

Huh? Well, I basically interpret this as: if you can break out of that anorexic mind-set of
"I mustn't eat very much and I must make sure that what I eat is boring to stop me over-eating" then you are going to have a far better chance of preventing relapse - and fully recovering!!

So I'm going to add this to my recovery checklist:
1. nutrition
2. support
3. eat a wide variety of tasty foods

And I'm also going to add to that, the challenge of trying new foods - even those which make me feel sick. Because at the moment that's pretty much everything I can think of, so I can't trust my own judgement.

...this should be fun...


*thanks ViR for the article link via twitter

** thanks to my big brother for sending me the full text version :)

the times they are a-changin'

Come gather 'round people
Wherever you roam
And admit that the waters
Around you have grown
And accept it that soon
You'll be drenched to the bone.
If your time to you
Is worth savin'
Then you better start swimmin'
Or you'll sink like a stone
For the times they are a-changin'.

I recently gave my gp a list of my options as I saw them. What is to follow, wasn’t the list, but rather the thinking behind the list:

1. continue on doing what I want (restrict and over-exercise)

2. find a middle ground where I can continue on as I am but without doing myself as much harm

3. change what I am doing

this was the actual list of options:

1. die

2. exist

3. live

Pretty confronting. But it made my decision so much easier. And yet so much harder.

I chose ‘live’. But by doing so I also chose ‘change’.

So how to change? Am I afraid of change? Yes. But what if I reframe change and view it as challenge? Does that make it less intimidating? Well, I’m not afraid of any challenge – I have three children after all. I have three degrees and work two jobs. I welcome challenge as the daily excitement of living. I am constantly inspired by those who embody challenge; scientists, adventurers, astronauts, athletes, engineers, artists…

…no one ever wrote a song about how great it is to stay exactly the same.

So I have started where I feel most at home – education. By reading and listening and asking questions I have been equipping myself with as much knowledge as I can to formulate my plan. I like a plan.

So what have I learned so far?

Firstly that change will not happen without nutrition. No amount of introspection will compensate for starvation.

And secondly I will need help - this is a huge change for me. Never before in my life have I ever uttered the words “I can’t do this alone, I need your help”. But I do.

So, big deep breath…it’s time to embrace my change. I’m not promising I’m going to like it. But change happens regardless of how hard we try to stop it – and this is my chance to direct and drive that change…

 

…and my time to me is worth saving – and I’m a strong swimmer.


 
this post was inspired by medicinal marzipan and her word by word series

relapse and choice

Those who know me know that I have just had one of the worst relapses ever. It came off the back of a problem at work and resulted in me very nearly requiring a hospital admission (you know, *not* the voluntary kind). Once I managed to pick myself up and resume eating, however, I decided to add some more tools to my recovery tool-kit. I read a book last week called A Girl Called Tim by June Alexander – I read a review here a little while ago, and since June’s a fellow Melbournian I thought I would have a lookie.

image

*Really* interesting read. At first I was worried – she makes constant reference to weights, something I know I find triggering. But to be truthful it didn’t affect me the way I expected. So relentless was her obsession with her weight – she hung so much on the numbers (her happiness, her success, literally everything hung on achieving a particular weight) that it had the opposite effect on me. I could actually see the futility in her constant weighing and obsessing. Me! Seeing logic? Hallelujah! 

So thank you June for a terrific, honest, frightening and cautionary story.

But thank you more because by sharing your story you have provided me with the motivation to make a choice I never thought I could. I have not weighed myself since last Friday. At all.

That’s 8 days

And I was a get-up-in-the-middle-of-the-night-to-weigh-myself kinda gal. Yes I find it terrifying – I described it to my gp the other day as ‘worrying that there was something terribly wrong with me but not being able to check’. But I’m hoping that by simply not weighing myself day after day after day it will become more habit and less forced.

Not sure I really trust myself long-term though, I think I might have to chuck out the scales completely, just to be on the safe side!