Posts Tagged ‘Living With an Eating Disorder’

Thoughts from the NEDA conference …

Thursday, October 21st, 2010

I wanted to write an eloquent and insightful post about the NEDA conference that I went to in New York, but I fear that I will be waiting a long time. Words are not stringing themselves together in the way that I’d like them to at the moment (which is a whole ‘nother post) and I am beginning to suspect that I may be over-complicating some of the relatively clear messages that I took from the conference. I have a habit of doing this.

Before I rip them – and myself – to shreds, I’m going to write down a few of the things that particularly stood out for me in two days that were full of information, and sharing, and caring, and all the things that I isolated myself from, both during my illness and, during my equally stubborn and internalised recovery –

1. You don’t have to do it alone

I had my first treatment for anorexia in 1993. Things were very different then. With limited understanding and some practices that wouldn’t stand up now, the ‘me Vs them’ model that eating disorders (EDs) are great at creating was given a good dose of unnecessary ammunition that took a long time to shift…

The NEDA conference, like the Beat ceremony the week before, was full of professionals, and carers, and those directly and indirectly affected by EDs, all coming together to help raise awareness and support people in their fight to get well. It was a joint event, on an equal footing, characterised by empathy and compassion rather than anger or blame.

I know that things are complicated. That there are financial considerations, and some outdated assumptions, and a huge deficit in support for men – but I got a real sense of collaboration that has to come to a more positive end.

2. Patience

A lot of this joint effort seemed to hinge on the recognition that recovering from an eating disorder is a slow process. That it doesn’t happen overnight, nor come immediately when the symptoms change or weight is restored. It requires, instead, a level of patience, a word that doesn’t roll particularly easily off my tongue -

Patience in waiting for the discomfort of change to gradually lessen.

Patience in learning that you can overcome challenges which seem insurmountable and innumerable.

Patience in catching up with experience and emotions and relationships and all the corners of a life that an eating disorder manages to get stuck in.

Patience in starting to trust others again –

Patience in them trusting you –

3. The other people

NEDA was honest and open, and it really made me consider how difficult it is for all those who are impacted by EDs; the family, friends and even professionals who also come to live under the shadow of an ED.

When you’re immersed, it’s impossible to realise the impact you are having on those around you or it was for me, anyway. Yes, I knew that I was causing worry; I felt terrible about pulling other people into the ED’s games and, yes, it certainly impacted on my home life and environment…but, I wasn’t quite able to translate this awareness into action, and I prized the eating disorder above everything else.

During the conference, I heard parents speak about their children; siblings, about the pain of not being able to save a sister or brother; and partners talk about how devastating the eating disorder was to watch -

It is hard seeing it from the other perspectives and difficult to resist the temptation to slide into guilt….but this is why the joint effort is so incredibly important; and why it makes knowing what we’re dealing with so key.

4. The science

I am not scientifically minded. I kind of see how it all fits together, but I have to concentrate very very hard. There’s lots of research coming out at the moment which even non-scientifically minded people like me can’t miss. It’s about understanding some of the neurological research and patterns; and also exploring how people are affected by eating disorder behaviours in cognition and things other than weight.

It sounds like we’re getting nearer to gaining a more comprehensive (body, brain, mind, context) take on what goes on.

I don’t think there was one cause for my eating disorder, nor that it will be possible to understand fully why I became so ill – but each little piece helps to make a bit more sense of the experience and the understanding helps me to move on.

5. Moving on

The ‘in recovery’ or ‘recovered’ question also came up a lot for me at the conference. I don’t know whether there’s an answer for this one: whether being ‘in recovery’ drags it out and keeps it present; or if it’s a realistic description given how quickly an ED can reassert itself, and how hard it is to transform some of the traits that can impact on its development.

For me, the conference was about recognising how far I have come – but also noticing the areas where my sensitivity is still high and acknowledging that I haven’t quite reached a resolution on some of the themes that were raised –

Like body image and self acceptance (because it’s not all about that, but the culture we live in makes the context hard) -

And relationships and emotional maturity (because I’m still catching up there).

It was also about acknowledging that I have moved on in relation to my own self perception. That, increasingly, I am able to separate myself out from the ED that I once saw as my character and identity; that I was attending the conference, not just as a recovering sufferer, but as a person.

This might not make sense, but it’s a mammoth move for me.

It’s a mammoth move for me, and one that wouldn’t have happened without all the treatment and support I received. This was my other message: the work that still needs to go on.

6. The reality

The NEDA conference was the second time in the space of a month that I have realised how lucky I was to survive and how fatal eating disorders are. I don’t know the exact figures, but every time I hear them, they seem to get worse; and every wasted life winds me.

I think things are moving in the right direction, but I hope they’re moving fast enough.

I also hope that some of the barriers that still exist (healthcare costs or insufficient treatment provision; a lack of awareness around different types of eating disorders), and the things that make it harder (the complexity of the body image / media / ED / self esteem relationships; the female focused language) start to shift – because fighting an eating disorder is not an easy battle for anyone to win.

In which I remember how hard it is to speak….

Wednesday, May 26th, 2010

I went out, at the weekend, with some people I hadn’t met before.

It was a beautifully hot day and my friends had brought a picnic so we sat, on the Heath, with the other picnic-makers, and I fell asleep in the sun. The conversation rose – and fell – around me; and I drifted in – and out – of what was being said. At some point, one of the guys (a chef, I think), produced a box of homemade cookies and handed them around. A joke was made, to his girlfriend, about how hard it must be to live with a great cook; and she replied, that it didn’t matter, because he’d taught her how to be sick.

The comment winded me.
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Alarm Bells

Monday, May 3rd, 2010

After a talk that I did in January, one of the attending psychiatrists asked me whether I was worried about relapse. I answered, without hesitation, that “no, I wouldn’t be going back there again, because my body won’t take anymore” –

There have been a few too many close calls in the past few years.

My recovery may have been a series of fits and starts; but, ultimately, I’m a bit of an all or nothing person; and, despite my behaviour, I certainly don’t want to die –

I am shocked by the ease with which the net can constrict again.
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Dealing With Things That Don’t Help

Friday, April 23rd, 2010

Yesterday I wrote about things that don’t help.

It was one of the hardest posts that I have written. It sent me straight back to some places that I have forced myself not to dwell on; and reminded me of how hard it is to have a voice. Particularly when you’re up against a system and not feeling that great about your own state of mind.

Today, I have been attempting – and failing – to advise other people how to handle these feelings.
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Things That Don’t Help

Wednesday, April 21st, 2010

I have always been against lists saying what you should – or shouldn’t – say to someone with an eating disorder. Mine was manipulative enough, without trying to control what other people said.

I have been careful, as I’ve moved through my recovery, to ensure that I take responsibility for my behaviour (whilst appreciating that it was an illness); and that blame is left behind (because it doesn’t do anyone that much good).

Today I was reminded, in an email, of how harmful it can be when your treatment team say the wrong thing.

This confuses my line.

I can understand it when ‘normal people’ muddle along and put their foot in it; but people that are meant to be trained? I thought that the few negative experiences I’d had were unusual, or because eating disorders were newer, at the time, and professionals still had a lot to learn.

Like…

1. Weight gain can be hard to handle, even though it seems (to an outsider) to be a positive thing
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Birthdays

Monday, March 1st, 2010

I am turning 30 on the 6th March.

The occasion is bittersweet.

It has, as birthdays tend to do, sent my mind racing up and down the timeline. Somewhat tragically, the memories don’t hang on the parties or the celebration, but on the particular phase of my eating disorder that each year has become bound up with.

20 through to 25 are pretty much blanks.

Interestingly, the last pre-Eating Disorder party is one of the most poignant, maybe because I hadn’t stopped taking photos at that point or because it feels, sometimes, like I have been frozen in time…
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Sick

Thursday, January 7th, 2010

I have been feeling a little sick over the past few days.

This is not a good thing.

The last time I was sick was the big d-day; the final swansong before I waved goodbye to a friend that I knew was killing me.

I realised, of course, that there’d be times when I might be ill, or instances when I’d find myself bending over the toilet again, whether I liked it or not; but, I didn’t anticipate the sudden stirring of memories that the once familiar taste of bile would evoke.

Like a horror film, with the flash-lighted-frozen-framed images getting closer and closer, the throbbing in my neck and the somersaulting of my stomach have triggered a slideshow in my head –

And it starts like this.
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Hunger

Tuesday, December 1st, 2009

We are programmed to forget pain.

This is a luxury of human biology but it makes it a little difficult to articulate an experience: the edge is softened with time.

Maybe this is why relapse happens (we forget how bad it really was); or why it’s so difficult to understand and empathise with the eating disorder experience.

Even I find it difficult to identify with my ill self now that I am a little stronger.
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Jekyll and Hyde and Multiple Me-s

Saturday, August 8th, 2009

An eating disorder makes you someone that you’re not.

At first, it made me a liar; then it turned me into an animal; for a while, it made me feel like a fraud; and, then it decided that I was nobody.

Or so it felt.

Jekyll and Hyde and the multiples of me has been ringing around my head for all these years and I couldn’t explain it until I’d put some of the pieces back together; until I started to get re-acquainted with the real me.
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The Scream

Saturday, June 20th, 2009

I can tell you this now.

It’s the loneliness that will get you.

Not the hunger, or the worrying, or the rituals, or the paranoia.

Not even the fear of getting fat.

It’s the loneliness that’s the real killer.

The longer you’re ill, the worse it is.

It makes sense really; time is a precious commodity and there’s only so much waiting for recovery that people can take. Life may stop for you – but it keeps on going for the rest of the world.

The irony is that you want to be left alone for the first bit. You want people not to ask and not to worry and not to expect anything.

Don’t worry. They’ll stop.

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Trapped

Tuesday, June 16th, 2009

Emily Dickinson didn’t mince her words. It’s bizarre to think that, even 100 years ago, people felt like I do. Strangely reassuring, particularly given the subject matter – imprisonment and isolation.

A prison gets to be a friend,
Between its ponderous face
And ours a kinsmanship express;
And in its narrow eyes

We come to look with gratitude
For the appointed beam
It deal us, sated as our food
And hungered for the same.

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Emotionally void

Monday, June 15th, 2009

Anorexia doesn’t just mess around with physical growth; it also screws up emotional growth. Putting on weight may sort out the physical side; but, in some ways, the emotional one takes longer to fix. 2 stone of physical growth may feel daunting. 17 years of emotional growth is even more so.

Particularly when you’ve become accustomed to keeping your emotions under wraps.

This is what my eating disorder was particularly adept at. It was one of its more honed skills.

Stopping emotions.

Dead.

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Lady Lazurus and Anger

Tuesday, June 9th, 2009

“I have done it again.
One year in every ten
I manage it—–

A sort of walking miracle, my skin
Bright as a Nazi lampshade,
My right foot

A paperweight,
My featureless, fine
Jew linen.

Peel off the napkin
O my enemy.
Do I terrify?——-”

Sylvia Plath, extract from Lady Lazarus

Sylvia Plath scares me.

I could hear my eating disorder in her voice.

I could feel the anorexia in the taunts and the mockery; in the red hot anger and the reckless self-destruction.

When I first got ill, this was what it was like.

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Unspeakable Things

Monday, June 1st, 2009

At the height of my anorexia, no one asked me whether I was okay. I’m far more approachable with a fractured ankle. It’s been quite a talking point.

The contrast is striking.

People are scared of anorexia. They tiptoe on eggshells around it. People don’t want to say the wrong thing. They don’t want to aggravate it. They don’t want to be implicated in it, maybe.

I completely understand. I didn’t want to talk about it either.

And therein lies the problem: we’re all concurring with it. It’s privileged, permitted to run riot, tacitly prioritied – because no one wants to speak about it. No one knows what to say.

The silence is deafening.

Anorexia is the great big elephant in the room.

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Thoughtcrime

Monday, June 1st, 2009

I have been scared of the thought police for a long time. The notion’s not as fantastical as it sounds. It’s just a little more internal.

In Orwell’s fabulous 1984, the thought police are out there. In my experience, they’re in your head. We know what we should and shouldn’t think. We’re well versed in checking our thoughts and the cautionary ‘I know I shouldn’t think this but’ type of apologies; accustomed to self policing what we do and don’t say to ourselves.

It’s probably okay in moderation. It’s probably part of our development into moral and ethical beings; of learning where the boundaries are.

I just tend to take things to extremes – and it’s taken me a while to appreciate that your imagination’s a very different landscape to the one out there.

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