Eating Disorders Awareness - One Truth About Anorexia

I'm conscious that it's National Eating Disorders Week. 
I'm also conscious that much of my writing here has borne witness to my own, very personal, struggle with Anorexia and that, whilst there are many apparent similarities between sufferers, each and every person has their own 'strain' of the illness. 
I recently watched a BBC documentary by a now recovered minor celeb who, having suffered from Anorexia in her youth, embarked upon a quest to find out 'The Truth about Anorexia'. I watched with a  degree of cynicism, (typical of me) because the results of this exploration were pretty obvious from the outset. 

(Aside) As it happened, I was more intrigued the next day, by the widespread and vicious backlash on various discussion forums, where anorexics ripped the programme, and its celebrity 'investigator', to shreds, claiming that she obviously hadn't been a 'proper' anorexic! 
That would be another topic!

One thing that I've learned from the large number of patients in the treatment centres I've been in, is that there IS no single 'cause' of anorexia. There can be no 'getting to the bottom of it' because it's as shape shifting as the virus for the common cold.  

You think you can spot an anorexic? It's the legs that give it away right? The two pins that, by some miracle, are holding them up. And the face. The way their eyes sink into the skull, dark skin sagging at the ridge of bone which runs from the top of their cheek to the deep line around the mouth.
The clothes that hang baggy off their shoulders. Tired, tiny arms, narrowed, fleshless at the tops. 
Yep. Definitely.
As I type, I sit in Cafe Nero. Couples sit sipping valentines coffee. A barrista sweeps conscientiously, moving the easel with the 'Hot Soup' ad, concentrating on each swish across the tiled floor. A young man sits at his laptop, looking over dark glasses at intervals. 
I'm drinking a one shot Americano with skimmed milk, hot. My make up is immaculate (last time I checked anyway). Subtle grey eyeshadow, a touch of mascara, a little blush. I'm about seven stone; that's forty five kilos to the metric crowd. My clothes are an eight. I've just eaten a Kit Kat. 
Nobody knows I'm anorexic. 
Nobody can see that beneath the recently acquired flesh, a cold skeleton howls, like a forgotten child. Nobody can hear the whispers, the taunting desire to have one of the brownies that the rosy-glow girl to my right is enjoying. Nobody can see the rapid calculations, the figures flicking up and down as I add, divide, add, multiply; 107 calories = my biscuit, 100ml of skimmed milk =  43Kcals x 2 plus a bite of cereal bar. It's too much. How can I compensate at dinner? 
Nobody sees the anorexic who knocks around in a body too large.
I may be sitting near another at this very moment.

I think I've digressed somewhere. 
I set out to illustrate the fact that the one truth about Anorexia I know is that everyone's illness is different.

During inpatient treatment people presented with dangerously low BMIs. But how they got to that point varied. 
Okay, we all have an issue with food. But some anorexics are calorie obsessed, whilst others are more preoccupied with the fat content in foods. 
Some are addicted to exercise (myself included) and can hardly sit down for more than ten minutes without having to get up and do press ups or squats; others can happily lie on a sofa for hours and sleep. 
Some patients have buggered up their system by taking laxatives and/or making themselves sick. Others won't take a tablet, even for a migraine.
Some quake at the sight of a potato because carbs are sworn enemies, others are too afraid to eat a carrot because it has somehow become a 'fear food'. Still more are terrified of dairy products, not touching milk or cheese for years.
I met patients who will 'water load' to throw their weight (water loading is a common but dangerous behaviour practised by eating disordered patients who consume vast quantities of water in order to fake weight gain). Then again, some people are so obsessed with knowing their actual weight that they will wear exactly the same clothes to be weighed. 
Some anorexics are so scared that their body will absorb fat that they won't use cream shower gels or moisturiser on their skin. 
I've met anorexics who drink copious amounts of alcohol, whilst others won't even sniff it.
When I was at my worst, I couldn't drink coffee for fear that it contained hidden calories. I couldn't trust the calorie content on certain labels and so I ruled out anything which I deemed to have 'too few calories to be believed'.
Some people can't watch food programmes, others read cookbooks obsessively and liked nothing better than to cook a three course meal that they could never eat.

Eating Disorders may present similarly, but no one sufferer has the illness in quite the same way, which may be why they are so difficult to treat and why they are still so widely misunderstood.

Lies, Damned Lies....

... and Anorexia.

If Anorexia is a faceless figure in an old black and white horror, then deceit is the dark cloak wrapped around the shadowed form.

As a fourteen year old, I watched as this graveyard figure misted around the sister I adored, breathing lies and cunning into the mouth of her soul.

When she spoke, it was with a new voice; a voice of distrust, defence and guile.

I hated the dainty steps of deception that I heard moving so quietly along the upstairs landing; from bedroom to bathroom; from sink to window, from hand to mouth to toothbrush. I hated watching the cloak pass over her - through her, each time stealing away a piece of the sibling I loved more than myself.

Lately though, I too have taken breath from the figure. I understand now, that same desperation, which shakes the pounding heart, and will go to such lengths to protect and disguise the disgusting truths of an anorexic existence.

Fingers pushing against the wall of my throat, I heave and retch, praying to keep silent.

My dad knocks on the door and asks to be let in.

I am washing the last of it down the basin, frantic, talking all the time.

I let him in.

"What were you doing just then, with your door locked?"

I search in corners furthest from the truth.

It must be feasible. It must be shameful.

"Oh..."

I can't bear the look in his eyes.

"I was... weighing myself".

I manage to whisper,

"sorry".

He wraps me in his arms to comfort my despair.

"Oh love... " Words of comfort pump shame around my body. "It'll all be okay... Just as long as you're not secretly drinking or making yourself sick"

A couple of days ago, a similar scenario. This time, I'm sure he knows.

Eyes watering, throat burning, nose running.

I was washing my hands.

Honest.

***

Not only does Anorexia make liars out of its prey; it is, IN ITSELF, a lie.

It's a throat grabbing, heart stopping, life sucking LIE.

And although one part of me knows that this lie is fundamental to the discovery, diagnosis and medical definition of this disorder, another part cannot possibly disbelieve the truth of what I see and feel.

It doesn't matter that that 'truth' is a distortion.

It doesn't matter that it may be a deception.

What matters is that no matter what the scales say, the truth is, it's never small enough.

Sucked in.

Purge

My fingers
reach down
my throat,
push back
and I heave
and surge
and spew again and again
and
again
my fingers
reach down
my throat.

I wish
the pain
would fall out
this way
or
weighted words
unspoken expulsion
from hot heart pounding darkness.


Desperation

is flecked with orange

tomato skin.

It's Official

The trembling walk across the flagstones.

I'm fashionably late.

I don't realise at the time, but the man in the thick designer glasses and the understated floral shirt, watches from somewhere within the brick hexagon and says to his (note scribbling) trainee, "Ah. Here comes a skinny person. This must be her".

This man, I've met him before. About sixteen years ago.
I almost want to gag at the memory of a tortured, teenage me; hunched, shaking in the back of dad's car after a one off meeting with this man, my sister's consultant, in the unit where she was incarcerated.

I remember he was kind to me.
Finally: someone who wanted to know how it was for a sibling.
Muscles held taut in my gut, I clamp my jaw; frightened his listening will force a desperate stream of projectile grief.

My mother, dressed in the small laughter of middle class embarrassment, rolled her eyes and clicked her tongue.
Stupid daughter... Doesn't know WHAT she's saying..! As if WE ever lived in denial..! As if WE would ever overlook such a thing! OF COURSE we knew what was happening! OF COURSE we knew ALL ALONG!

Choking on the words forced back down my throat, I shook all the way home.
Shook as dad glanced apologetically in the rearview mirror.
Shook as dad worriedly concurred that PERHAPS it WAS possible that I had known, long before them, the reality of my sister's terrible death wish.

I didn't recognise the man, even as I tried to remember something concrete about the session we had had all those years ago.

I would never have dreamed I would end up in front of him again. And certainly not for this reason.

*****
At the end of today's assessment: the words, "Anorexia Nervosa".

Every syllable ricocheted off the wall of my chest.

How can I know and yet not know?

"You believe me? You take me seriously?"

I am frightened and shocked and ashamed and relieved and disgusted.


The question is not, whether I believe you, he says. The question is whether you can believe yourself and take this illness seriously.

Again. Bullets.

I'm not well.

I knew that.

I need another assessment appointment. We haven't quite covered everything.

We haven't?
God.

Worst thing?

I double booked it for the woman's appointment next Monday.
THAT'S how screwed my mind was.

Now what?

Before I leave, he comments on the dryness of my hands. Says he noticed as we met and shook hands.
He noticed that? What kind of person IS this?
He suggests creams.
I admit I am frightened of absorbing calories through my skin.
"Not possible", he persuades.
I nod, gritting my teeth and flashing untrusting smile.

"Ok", I lie. "I'll start using cream on the splits".
(I have eczema)
Next he'll tell me vitamins can't make you put on weight, but they can. I read up on water soluble and fat soluble vitamins. I know my stuff.

"I'm seeing ..... (my sister's name...)... this afternoon..."
Something in me freezes over
"I won't tell her I've seen you of course... confidentiality and all that..." He tails off.

"I have no idea what she thinks or feels", I offer, lamely because I am at a loss.
He looks at me, studied, careful.
"I think she's been very worried about you". Somehow, his hand is stretched out to me.
"I think she's been very jealous of me", I sink my teeth into his hand and bite down hard. "Jealous that she's in hospital and I'm not"...

He laughs (uneasily?). Blood drips from my mouth...

"...That's the only reason she gives a toss".

I walk away, my throat and eyes stinging and swelling; the metallic taste on my bottom lip.

He hates me. he hates me. He hates me.
He loves her. He loves her. He loves her.

I want to wring my own neck as I get into the car.
Maybe her neck too.

It's eleven o'clock.

The sun shines bright and I need to do a number of very bad things to get through the despair of the day.

I do all of them but still, thirteen or so hours later, I am sinking.

Balancing Act

Left

I can only feel the cold wind of despair as it howls through me. I am left gasping, winded by the force of the blasts.
It's not depression. It's despair.
It's the claws of hopelessness tearing at hidden flesh.
It's the mouth of disgust sucking marrow from my bones.
And I am left with nothing.
Nothing then
nothing now
nothing in the when.

Ahead, a black hole
Behind, a sheer drop.

Despair affords me no rope
with which to hang
on to hope, or choke
this demon.

It's been a steep weekend and I haven't got it in me to explain why.

I've eaten badly, drunk hungrily and driven frantically.

If you feel disgusted by my negativity, I can bet you a thousand wishes that you can't even begin to reach the levels that I have.
I have tried positive self talk, prayer, gratitude, acceptance, reprimand, reframing, reinterpretation, re everything.
I've counted my blessings, immersed myself in thoughts of those less fortunate.
I know I don't count on the scale.

I hate myself all the more for that fact that I have no excuse for my despair.

And can I tell the woman?
I don't want to see her tomorrow.
She expects me to have had a good weekend (as did I). The fact that I feel this hollow is shameful. I feel like a disobedient child.
I have let her down.
Somehow I must be choosing misery.
I am a disgrace.

Memorial

I have to admit that my blood ran a little colder as I drove back to the gym and heard this report on the radio...

http://uk.news.yahoo.com/5/20100928/tuk-eating-disorder-victims-are-remember-45dbed5.html

I guess it is silly to get worried. After all, my choice right?

But the girl who died was six and a half stone.

I have fallen below six that there's nobody to scrutinise me.

My fear of a heart attack doesn't seem quite as strong as my horrible determination to lose weight.
Until I'm alone in the dead of the night, that is.
Then the fear of death at least matches the will to risk it.

EDs in adulthood

It's a strange thing to develop an eating disorder in your thirties without having had too much of an issue in the years prior to this.
I've waded through thousands of Google pages in an attempt to find articles about late onset anorexia and bulimia. I suppose because I was hoping that someone far more knowledgeable than me could offer me a piece of jigsaw that I don't have. I was hoping to find a few sentences that would make sense of the jumbled, misshapen blobs of bewildered guesses that occasionally float between my cornea and the mirror of anorexic truth.

Most of the articles documenting episodes of anorexia in later life are actually about the recurrence of an eating disorder which the patient has suffered from as a young person. Easier to understand a relapse than an illness that comes from out of the blue.

So, what then, is going on if there is no SERIOUS tendency towards this illness until a person is in their early thirties?
What is going on there?

I'm possibly as lost as anyone else when it comes to understanding this.
I have sketchy ideas (at best) that when pursued, completely fragment and disintegrate and at once become impossible and absurd.

I haven't been here too much of late. Not for lack of wanting to write; more for not being able to find the energy.

I have a lot to say but very few words to speak with.
Please forgive me if I am not responding as much as I should be.

Easter and the Joys of EDs

Sometimes it seems to me that I don't really have an eating disorder at all.
In fact, often when I think about it, I end up with the conviction that somehow it doesn't exist at all. It's all in my head.
Which of course, it is.
Kind of.

Celebration type days like today, faced with masses of food, unable to get to the gym after giving my body such a hammering yesterday, I start to question my doubts. (The absurd irony of having doubts about doubts doesn't escape me).

It is hard to describe the fear of weight gain after a few days of rigid control.

On the upside, driven by the fear, I went for a long walk in intermittent sunshine...
... and took a couple of (poor quality) pictures from the top of the hill.

Anyway.

Happy Easter to anyone who reads. And to those with an ED, well... I guess there are many who will find today difficult. There's a whole other post in there somewhere...

What It Takes

As with all things in the mental health realm, the DSM IV lists a number of must-haves in order to be a Real Live Anorexic.

If you have been reading here with any regularity (or any memory), you may recall that my sister, who has spent roughly half her life being defeated in her attempts to starve herself to death, was possibly the case on which the DSM criteria is actually BASED.

Okay. Maybe not.
(But she could very well be)

For anyone interested, the DSM states that Anorexia Nervosa is defined by the following four factors:

• Refusal to maintain body weight at or above a minimally normal weight for age and height: Weight loss leading to maintenance of body weight (85%)

• Intense fear of gaining weight or becoming fat, even though under weight.

• Disturbance in the way one's body weight or shape are experienced, undue influence of body weight or shape on self evaluation, or denial of the seriousness of the current low body weight.

• Amenorrhea (at least three consecutive cycles) in postmenarchal girls and women. Amenorrhea is defined as periods occurring only following hormone (e.g., estrogen) administration.

Obviously, seventeen years of bearing witness to the horrors of this illness have taught me that in actual fact, the above prerequisites to the label of 'Anorexia Nervosa' are only the very tip of the iceberg.
I could name many more factors.
But that is, perhaps, for another post.

You could be forgiven for thinking that, given the fact I have lost my sister to the horrifying effects of this illness... given that I have raged at it, pleaded with it, cried to it and knelt moaning before its merciless, monstrous darkness... I would be the least likely person in the world to be drawn into its world.
You'd think I would be incapable of drawing others under the agony that wrapped itself around our family.

You'd think.
I thought that too.
Until something, at some point, changed.

Today I am 6 stone 5.

I'm not a proper anorexic... (which is what I wanted to write about when I began this post).

I'm very, very confused because I don't 'fit' in with the notion I had of Anorexia.
I thought that Anorexia had to come easily to those with it.
I thought that I was a 'fake' because I crave chocolate and all I really want to do is eat lovely food.
I think I'm crazy because I hate working out, but i have to, but I hate it, but I have to.... and my HUGE fear is that one day, I won't have the willpower to drive myself to run for miles, climb hundreds of floors, cycle like a maniac, cross train at high intensity, row hard and fast, use the resistance machines, do my floor exercises until I can't move.

Anorexia, if it is anything like this, isn't about suddenly hating food. It's about a spiral of absolute dread that you will lose control of it, even as it controls you.