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 That there are financial considerations, and some outdated assumptions, and a huge deficit in support for men – but I got a real sense of collaboration that has to come to a more positive end.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

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.

The conversation carried on. Someone joked that it would be easier, then, to eat what you wanted if you could just throw it all back up. Another, that they’d seen a show about a hospital where people ate toilet roll. Someone else chipped in that apparently “they” drunk water out of the showers, to make it look like “they” had gained weight.

And I felt my knees wobbling, and my friend’s colour rising, and my heart racing –

And then I left.

I was that girl who drank water out of the bathroom tap, at 4 in the morning, so that I’d be ready and prepared when they came with the scales. I fell for the illusion that bulimia was the solution, and a miraculous way that I could eat – without gaining weight. I cried in hospital showers and screamed at nurses and was reduced to a crying, hurting wreck.

And yet I said nothing.

Nothing.

I just crumbled under the shame.

I have been wrestling, since the weekend, with why I handled the situation so badly. Been trying to work out what I might have done differently, and acutely aware of all the things I didn’t say. What is the point of talking about an eating disorder if I check, first, that the audience is safe?

I know that it was hard to confront a group of strangers. I know that I was disarmed by the sudden turn in conversation. There was a certain irony that I was beside the very hospital, where I’d spent over three years of my life –

And yet I said nothing.

Nothing.

And now I feel a different kind of shame.

I have been trying to tell myself that the people, in question, did not seem likely to develop an eating disorder (but then you might have said that about me). That, whilst I am acutely aware of eating disorders’ trail of devastation, my perspective has obviously been swayed (although the numbers are rising and eating disorders kill). I have acknowledged the feelings of the person I was there with (though I think the shame probably belonged more to me); and the context of the conversation –

But I perpetuated the myth that an eating disorder is not a bad thing –

And I didn’t stand up and speak the truth.

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.

I am stunned by how, despite my insight, and even after stripping away the eating disorder’s dishonesty and exposing its illusions, it can still try and steal me back.

For the past year, I have been making myself white coffees. It has only taken a few cruel words to undermine the new regime, and now I’m back to drinking it black.

A few months ago, eating out had become quite comfortable. Now I am starting to get a bit panicky, and dinner in public places come tinged with dread –

Even though I know that the company is preferable to the isolation; and health, far more favourable than stepping too close to the other end.

This is how the eating disorder grabs you, however prepared you think you are. A soft whispering that one omission will be okay and then, suddenly, the clamps are on again. This is how it wriggles its way back and re-inserts it’s claws. A few subtly planted thoughts and, bang, you’re fighting all over again.

And the shutters are down.

It would prefer that I didn’t write about this (as I am meant to inspire hope). It would rather that I pretended that everything was fine (because, after all, I’m still eating three meals a day – mostly – and doing passably well). It suggests that there isn’t anything to worry about and I’m ‘playing for attention’ –

But I recognise the signs and this imposed silence is the ultimate alarm bell.

So, because I am a little shocked by the ease with which it has re-instated some old and unforgiving rules -

And, as I hadn’t expected myself to give up the driving seat, quite so readily –

I am going to start by taking my voice back and reminding myself of what I’m fighting…

Because, I hope that defying the order of silence – and talking my way through this unexpected struggle – will be the best way I have of keeping myself well.

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.

I have tried to think about how I moved beyond the embarrassment that I might be creating a fuss; the sense of shame that I was seeking attention; the urge to shout louder when my pain was overlooked.

I have encouraged people to try and ignore the little voice that says they’re undeserving; and remember the bigger picture; and focus on the ignorance behind some people’s words.

But I also remember the kick in the stomach; and the heat of shame; and the desperate spur to go further and further and further…

Until they see.

I decided, therefore, to write a few of my stories, because experience speaks louder than words sometimes; and I’m not sure that I’m managing to say what I need to convey.

Misbehaving

I didn’t do well in my first inpatient unit. I fought, like a caged animal, and did things that I can’t now forget. As every kilo was agonisingly gained and the struggle, interpreted as a sign of my misbehaving, I grew more resistant to recovery – and increasingly convinced that I was somehow bad.

We sat down, one afternoon, in the meeting room, and went through my non-compliance and its repercussions. The battle ground was, in that patronising conversation, well and truly set. I decided to play along – while I had to – with the knowledge that one day I’d prove my point and “win”.

I left. Lost weight. And after 6 months, they stopped taking me back.

For years, I held the fact that they hadn’t beaten me as a trophy. “Hah!” I thought, “if they knew that they hadn’t made the slightest difference, despite their threats…well, who’d have the upper hand then?”

The thing is – they weren’t in on the competition; in fact, I never saw them again.

So, there weren’t any victors and no one-upmanship; and, by the time I realised this, I’d gone far too far to turn back.

“Seen thinner”

A nurse once told me that she’d “seen thinner”. It’s not the kind of thing that you want to hear when you’re about to be admitted to an eating disorders programme. It infers, somehow, that you’re a bit of a waste of the resource.

I didn’t know how to respond (because you don’t want to take up someone else’s time); and I felt a little embarrassed (because they were clearly talking about my ‘non-illness’ behind my back); and went home on the first day, feeling a little perturbed.

Over the next few months, each weigh day, I would turn up a little lighter; and, it felt like a perverse gift to justify my place. “Look”, I could feel myself saying, “I’m doing what you asked, and proving that I need you, and showing you just how much my head hurts.”

I was playing Russian Roulette and nearly didn’t make it through that summer.

Moving beyond blame

The comments, in both these instances, weren’t the sole cause of the outcome. I was already on a steep and slippery slope. They did, however, give me a sharp shove; particularly in the earlier stages when I was still confused about whether I was ill – or well.

The thing is, the people who claimed that I was “misbehaving” aren’t the kind of people I’d now give two minutes of my time too – and yet I let their ignorance determine my actions for the next however many years.

Similarly, I didn’t really consider that the “seen thinner” comments which seared so deeply at the time were contextualised, I would imagine, in a lack of understanding – and a lack of NHS funding – and my inability to stand up and say, “actually, when you say that to me, you negate my illness and make me feel like it doesn’t really exist”.

Hindsight’s a wonderful thing.

So, whilst I can’t give out any much-needed help – or make the hurt go away – or rationalise the ‘treatment’ that some professionals provide; I just want to say to anyone in a similar situation, that you’re not alone, nor unworthy -

And that I wish, on reflection, I hadn’t lost so much because of a few things that shouldn’t have been said.

How has anyone else managed to let go of comments that might have made it hard to move forwards?

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

When I was 13, the inpatient unit I was being treated in was visited by a specialist consultant. In the course of one afternoon, she managed to reduce over half the 25 patient cohort to panic and tears. Commenting to one girl that “I barely recognised you,” and another that “you need to watch that stomach”, and a third, “you’re looking far far better now”; the distress evoked by her comments was palpable, and their insensitivity, imprinted on my brain.

It took me a while to see weight gain as a positive. I find it hard, even now, to consider “looking well” to be good (IT IS, Melissa).

I appreciate that this is part of recovery and changing mindsets – but it’s a tricky area that can sometimes be misunderstood.

2. An eating disorder isn’t just bad behaviour

I am the first to admit that I was not the model of good behaviour when it came to food. I played around with what I was meant to be eating. Lied, schemed, cheated, smashed plates, had screaming fights with my family, and generally didn’t “behave.”

I was also very unwell and not really in control of what I was doing.

I think most eating disorder treatment centres are probably more tuned into the complexity of eating disorders now; but for any old schoolers who still think ‘punishments’ (no going out / no phones and the like) are helpful –

They’re not. They just make the battle worse.

3. An eating disorder isn’t something to be ashamed of – or shamed by

This is similar.

The day that the other patients – and my parents – and anyone else within earshot – were informed of the “disgusting” things that I’d done to get rid of food; my self esteem plummeted to new depths.

It took years and years to recover.

Please, if you’re a professional, don’t resort to shame.

4. Making comparisons to other patients never really helps

When I was told, at 19, that “they’d seen worse”, I went out to prove them wrong; and a few months, an emergency admission and a section later, I’d made my point.

I was, of course, the one who really suffered from making this point; but, given permission to push the eating disorder further (because I clearly had leeway), and feeling like I wasn’t quite living up to my reputation (as I evidently wasn’t ‘that bad’), the stakes were raised – and I went for bust.

I know that not all eating disorder sufferers experience this competitiveness and that it seems perverse, to an outsider, to compete over weight; but, if you’re measuring your worth in terms of how little you weigh, comparisons feed straight into a skewed head.

5. Asking for help is a big step

It takes a lot of courage to reach out for help. It involves risk (I may have to change), and exposure (I will have to be honest), and vulnerability (my secret will be shared), and acknowledgement (I am ill, and need help to get well) – and that’s before the agony of deciding whether you’re worthy of the aid.

It didn’t happen to me, but I saw what happened when people weren’t taken seriously. It got messy. And antagonistic. And hard to take the same brave step again.

6. Predicting the future is impossible

A year after I was diagnosed, I was told that I would never recover. “People like me”, apparently, “were the least likely to get well” and “the most likely to suffer extreme effects, like ripping your stomach or dying from a heart attack”.

When you’re young, what the doctor says goes. When you don’t know what’s happening to you, it’s hard to challenge someone who’s sure about what should be said.

Please don’t predict the future – or resort to threats – or pull out the scare tactics –

Because I was already terrified of what was going on in my head.

P.S….

I had a lot of treatment. Most of it was great, delivered by passionate, empathetic and caring nurses and doctors. Only some of it left scars. But they ran pretty deep.

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…

So, there we are, at my 12^th fancy dress (country-themed: it was cool at the time) party; and I am a Spanish flamenco dancer in shocking red over a Victorian-petticoated-skirt. There is a little Mexican-hatted girl beside me, and a Chinese dress a bit further down and I don’t quite know what the rest of them were thinking. We are lined up in a row, beaming at the camera. Later, we watched Lorenzo’s Oil, which was a bit heavy duty for a Birthday; and, we ate fondue, which was my favourite food before I became too scared to eat.

There is not a photo for the next year, nor a theme that springs to mind; but I remember what I was wearing – a long blue Tammy Girl jumper over leggings – and I know that I had just started getting scarily thin.

After that it blurs. All that lingers is the fear of Birthday cakes and a resentment at having to celebrate things with food. We fought, I think, and got frustrated, because, it seemed a bit of a farce to celebrate when it was all going so horribly wrong.

18 comes next, and I wasn’t doing too badly. We went to an Italian, a whole huge table of us, and I was beginning to feel popular and grown up, and like things might fall into place. I had a bean salad (which was horrible) because the pizza was too scary; and got a kebab – of two – to throw up on the way home.

I don’t remember my 21st. I was very ill that year. I feel a little deprived, on hindsight; but I imagine it was a date to endure, rather than one to enjoy.

On my 25th, I went for a drink in the afternoon. The ring that my parents had given me fell off somewhere between rehab and the pub because my fingers were shrinking at the rate of knots. Within two weeks, I was back in hospital.

On my 27th and my 28th, I smiled politely and marked the occasion – but made sure that I was home in time for my nightly binge.

My 29th was my first bulimia free Birthday in over 15 years and was nearly cancelled as I realised that I had lost my friends. It came with a valuable lesson – quality and not quantity – and, whilst I didn’t quite make it to cake, we did make it to Ping Pong Dim Sum, and I started learning how to have fun –

This year, things are totally different.

I am, I’m aware, in a place that I didn’t think I’d reach, celebrating an occasion I wasn’t sure I’d make; and I should, I feel, be pretty happy that I will be spending my 30^th with friends and family, rather than a toilet bowl and a plate of food –

Only the thought of that child – and then this adult – is heartbreaking; and, after all those years, it only just feels like the ice is thawing and the flamenco dancer is coming back to life.

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.


Ten past eight in the morning and a school toilet and a scrawny thirteen year old who’s holding her breath until the door closes behind the last person because she’s just realised that a finger down the throat will take away the fear of the yoghurt that’s been messing with her head –

- 1995 and the sudden liberation following the post-meal supervision and a desperate attempt to dig out anything that has been consumed during the day because fighting is imperative, and not trying would be given in –

– 1998 with cracked knuckles and blistered lips and the burning taste of thick yellow bile, because the last pasta spiral is lodged, somewhere, and my head won’t leave it alone –

- university lectures and half a bottle of mouthwash to swill away the smell that might reveal me and a hefty spray of deodorant, because nobody must ever know -

- 2001 and a carefully folded pile of clothes and a bag of empty wrappers; and, a skeleton, clinging on to the wheelchair bar to the right of hospital toilets because it’s just the right height to hold her up, and she’s reeling from the force and exhausted from the effort -

- rolled up trousers and turned back sleeves and a short sharp heave before its back to the office –

- hours and evenings and days, spent eating myself into oblivion; with the TV turned up to drown out the thunderous noise of the vomit shuddering through the sewage system and splattering across the walls –

- 1997 and falling asleep on the bathroom floor because my heads spinning and spinning and spinning and I just want to sleep now –

- sneezing blood and dreaming of throwing up teeth –

– waiting for the night nurse to pass by with the flashlight in 2006, because the desperation to throw up is whispering in my ear and making me jump every time my body tries to fall asleep, and there’s a ten minute interval between the checks -

- 2005. A deep breath and a quick stomach flick –

When I started this blog, I said that I wouldn’t visit these places again. No gory details, I promised, no giving up more time to the things that have stolen enough. Keep it clean.

There are some things that you can’t forget, however hard you try.

There are some experiences, that need to be captured, in order to be released –

And some times, when it’s okay to cry, bitterly, for the things that you have suffered; because it means that you’re feeling sympathy for yourself – rather than hate.

This is one of those times; because, whether I like it or not, I am probably going to be ill, at some point; and whether it’s pretty, or not, it’s important to acknowledge what happened –

- because I might be able to let it go properly then.

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.

Starvation is like a physical pain. I’ve been trying to remember how it felt but you can’t visit the experience: it’s a place that you only enter when your body has exhausted the resources and been stripped bare.

I wouldn’t advise this.

Even though it’s been numbed, I am scarred by the effects.

Even though the hunger has been sated, the deprivation still lingers, ominously, in the background.

Starvation plays games with your mind. It wakes you up, at the three in the morning, and makes you question whether you have eaten something. It demands your attention so that every conversation and interaction and activity is carried out in body – because your mind is in other places thinking about food.

Hunger makes you desperate. It tells you that walking to the shops at one in the morning is a good idea, and it makes you forget to check for traffic. It deems every morsel meaningful, so that “just eating” doesn’t feel like an option – and “just food” no longer exists.

Fear makes it impossible to stop the starvation or feed the hunger. It makes you believe that one additional mouthful will be fatal; or that that the one last bit that you can feel –but can’t throw up – will be intolerable. It is the clenching of a fist or the winding of shock or the constriction of breath – right inside your gut.

This is the eating disorder trap: the fear creates the hunger – and the hunger feeds the fear.

It’s a state of perpetual anxiety that you can only understand when you’re caught in the loop –

And I wouldn’t advise this.

Because even though I can’t re-create the feeling, its impression lingers, painfully, in the background; making me wary around food and edgy around hunger.

And even though I can’t re-visit the intensity, the feeling of panic and the pain of pure terror has left a mark; making me look at the reality and articulate the experience –

Because we are programmed to forget pain.

And I don’t want to go back there.

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.

The Liar.

I am unable to tell a lie now. I have used up my quota – and some. Mostly, on the amount that I had consumed – or the outcome of the consumption; some, on what the scales didn’t say; the remainder on making sure that the truth was not uncovered.

It’s funny how one lie grows. Or not.

Trying to keep an eating disorder secret is hard work; trying to maintain it, harder still. After a while, I lost track of what I had said (and to whom), and what was real (and what had become real by default)….

The fear of exposure was paralysing – but the biggest cost falls on the perpetrator: each and every lie is a little assault on your sense of self; and, even then, it’s only a matter of time before someone puts the pieces together-

It’s virtually impossible to keep anorexia under wraps; bulimia can be concealed for longer but, eventually,the guilt and the deceit are as corrosive as the stomach acid. In both cases, exposure is almost inevitable.

It’s the reaction that’s a little more variable. I became like an animal.

The animal.

You do things you don’t want to do when you’re cornered.

You go places you don’t want to go when you’re starving.

Supermarkets at 3 in the morning and toilets in stations; growling and hissing at any tentatively stretched helping hands; rummaging through bins and rubbing food in your clothes.

The pain is primitive and raw. Like a savage animal, it screams and screams and screams -

Until you learn to manage it.

Which is where the fraud bit comes in: by day I am human – but just wait until what happens at night.

The imposter.

For a long time, it felt like I was leading a double life. There was the socially acceptable me – and the me that broke the rules and did things that you shouldn’t do. Like throwing up in public toilets or watering plants with build-up.

Being two people is hard: you’re always waiting to be found out; always waiting for the other version to be discovered. Nothing can be taken at face value when its complicated by your secrets, when there’s a ‘but’ for every positive and an ‘if only they knew the truth’ lurking beneath the surface.

So, it’s a total negation: one side cancels the other side out – and you become nobody –

Nobody.

If you’re nobody, then the eating disorder has, by default, won. It makes you somebody – or so it will have you believe.

After you’ve lied – and then pretended – and then done things that people shouldn’t do: well, there’s not much of the real you left. There’s not much to feel that confident about.

And so, in the absence of a positive alternative, and when you’ve lost any real sense of self, giving up the one thing that you do have is even harder.

But not impossible….

Because the behaviour are part of the illness, not part of the person.

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.

Being lonely hurts. It’s a strange mixture of childlike neediness and Munch’s The Scream. Edvard got it spot on. It’s so painful that it’s nearly overwhelming. It’s also a natural consequence of an eating disorder. On so many levels.

Stage 1: secrecy and shame. You hide what you’re doing (because what will they think?) and you don’t want people to see what you’re up to (because they might just try and stop you); so you make up excuses (no I’m already busy at the weekend), and skirt around the truth (or just blatantly lie), to manufacture a little distance. To make sure that you’re left alone.

They’ll keep asking for a little bit.

Stage 2: the patient syndrome. After stage 1 has been going on for a bit and people have begun to work out – despite your best attempts – that something’s not right, patient syndrome kicks in. Out comes the white kidgloves, the censored conversations (oops, we must have forgotten to invite you) and the edited invitations (don’t worry about coming for the meal, just pop along before for a bit).

But that’s what you wanted, isn’t it?

Stage 3: the patient syndrome (ii). A progression. When you’re too ill to even pretend. When you’re so sucked in to the wonderful world of eating disorders that you stop worrying about what’s going on around you. Outside, the wheels keep turning. You might not notice it, but life is going on.

Without you.

Until.

Stage 4: The Scream.

You notice it.

The pain is tangible. It’s a hollow ache with searing pangs of regret and desperation. It’s “another country” – to quote LP Hartley –“They do things differently there”. And it’s not even the past. It’s the present.

It’s like listening to a language you don’t understand.

It’s like standing on the wrong side of a glass door.

It’s like waking up and not knowing where you are.

As I said, the loneliness is the real killer.

Going back into the world

If you want help with feeling like this, visit the ‘Someone to talk to’ page.