I stopped because I am not sure, yet, what I’d like to say.

That, of all psychiatric disorders, Anorexia Nervosa has the highest premature mortality rate. That the mortality rates for Bulimia and eating disorders not otherwise specified (EDNOS) are equally terrifying.

That part of the complexity of eating disorders lies in the fact that no experience is exactly the same. That there are resonances and similarities, but each person’s experience is unique.

That I am deeply worried by the closures of units that I keep hearing about, especially those that I have known. That I am also scared by the growing number of sufferers and, particularly, of younger – and older – and male sufferers.

That it is as important to focus on awareness of recovery as it is to focus on awareness of being ill.

I don’t know.

All of these – and nothing. A large part of my life has been stolen by an eating disorder and I do not want to give it anymore time –

No. This is not quite true. Part of the taking back is choosing to give it time. It’s just that the time is spent in a different way.

I have had a rough few months. I try and skim over it because it is easier that way. Because there is less room, now, between me and my blog, and it is therefore much harder to hide. Because the time has been golden, too, and it’s hard to reconcile the magic and the struggle. Because even with 18 years of experience and a good whack of intensive treatment, an eating disorder can still ambush, ensnare and baffle. Can re-emerge, when you think you’re on the straight and narrow; or slip in when the routines that you’ve built to keep it out get perturbed –

And so this is my message.

Not that an eating disorder haunts forever – but that it is a difficult battle to win.

That it needs to be talked about for these reasons. Because it is a difficult battle to win and a difficult experience to talk about; and because the complexity of eating disorders means that they are difficult to understand. Because we’re not winning yet and we need to work together. Because recovery is very possible, and it’s important to tell that story as well.

There’s lots of stuff going on this week. beat have released a much needed report on the use of images in the reporting of eating disorders; there’s a busy schedule of online and offline events; Men Get Eating Disorders Too have launched a new membership scheme; we’ve got a cool Facebook page focusing on the positives of recovery –

And I’m using the time to touch base with myself and think a little bit about how I’m going to move things forward in the coming months. How I can make sure that I win my battle, and continue enjoying the amazing things that recovery can bring.

It is not an easy battle, nor fought on a single front…

So, in no particular order, these are some of the things that we discussed.

Making the decision

I made the decision to recover on multiple occasions. I decided that it was a good idea time and time again. Each decision, though I didn’t realise it then, was a brick in the foundation; and, I started growing when the emphasis moved from what I would stop doing in relation to eating, to what I would start doing in relation to life. That subtle shift made all the difference. It tipped recovery into the positive, rather than making it all about what I was losing and giving up.

I didn’t make the decision

I’ve written before about ambivalence and waiting for the ‘aha’ recovery moment. It did not come. I don’t know whether it ever does. Right up until the point when I stopped bingeing, the uncertainty hung, and clung, and tempted me back. The same thing happened with gaining weight. I did not wake up one sunny morning and find that it had suddenly become okay: I had to start while I was still clouded with doubt.

Cold Turkey

I went ‘cold turkey’ on bingeing. I stopped, over night, because I couldn’t manage stopping for one day. It was all or nothing and, after years of daily purging, I couldn’t decipher the shades of grey. One day without it was unbearable – so I had to stop thinking about the one day and start thinking about the rest of my life.

I had attempted cold turkey before – but you don’t have to stop trying if it doesn’t work first time.

My ankles did not swell up (even though they had in the past). I did not treble in weight over night. My body did learn, within about a month, how to process food. I did find that one day was bearable and I did break the day down into hours. Oh yes, and I ate.

Recovery involves eating

It took a number of years for this to register. Eating makes it easier not to binge. It’s also a requirement if you need to gain weight. I’ll come back to this one…

Breaking bingeing routines

Going cold turkey on bingeing meant that everything changed. I won’t pretend that it’s easy. The first few months, it sapped my energy in the same way that the illness had sapped me. I made it through by…

• Lowering the bar: I gave myself a break and didn’t expect to feel great. I didn’t fight the days when every minute stretched into an agonising hour, and I didn’t try and plaster over how I was feeling. I just allowed myself to be.

• Distractions: Because there were hours to fill when I stopped bingeing and lonely gaps where other people should have been, I had a long list of basic things to keep myself going. Su du ku, films, magazines, card-making, the internet, walks. Nothing too demanding, but enough to get me through the day.

• Eating: I could not stop bingeing while I still refused to eat. Simple – and yet so painfully hard. The first few months weren’t about weight gain, for me; they were about getting enough inside me to give me a fighting chance of fighting the bulimia. It is impossible to do this if you’re still in starvation mode.

• Shops, reductions and associations: These were everywhere. I had a supermarket on my doorstep and a routine that was etched in stone. I knew the reduction time at every store and had managed to include most foods within my bingeing routine. Planning, preparation and risk management – I thought about what I was doing and put precautions in place long before I actually began.

If, then

We talked about my “if…then” strategy during the vodcast. After so much therapy, it had become second nature and totally ingrained. “If this happens then I will…” got me through some sticky stages and is a way of thinking that seemed to minimise the risks. “If I want to binge then I will remember that the feeling will pass in a few hours time”. “If I feel tempted not to eat, I will remember that I don’t need to feel guilty because eating will help me get nearer to life”. That kind of thing. It goes hand in hand with self talking, which is the other thing that got me through.

Self Talking

I lay in hospital one night worrying about how I would binge on a loaf of bread that had cost me 10p in the reduction bin. This is what an eating disorder does to you.

I reminded myself of this whenever I felt my resolve slipping. That my life was worth more than 10p. That I did not want to wake up and suddenly realise that I’d lost another 10 years. That eating was okay and gaining weight, totally acceptable, because I’d decided that I was going to give myself a shot at life.

And that people were more important, to me, than food.

Loneliness and re-engaging

It is the loneliness that got me – and the loneliness that spurred me onto being well. It could not be undone in a day, nor undone by anyone other than me.

For the first phase of my recovery, I remained alone, both in the long empty evenings, and because my head was in a different space. It was tempting, then, to be sucked back into the spiral – but that would just have kick started the cycle all over again. So I waited, and I talked to a few wonderful people who propped me up, and I started being more proactive when I had moved through the initial all-consuming stages of change.

Telling people

I told people. This is hard. It is particularly hard if you’re ashamed of your behaviour, or if you’ve said that you’ll change so many times that it starts to fall on deaf ears. It is hard if you’re scared that you’re not sure you’re ready to change, and you’re therefore creating a space to be challenged by someone else.

I was surprised.

When I really started fighting the bulimia, the people who were aware of what I was doing completely held me up. They did not judge me and they kept me going; and, a little bit later, when I got cold feet, their support and my gratitude stopped me slipping back.

Gritting my teeth

I am still not very good with certain foods and don’t like being out of control. Over the past year, I’ve got good at gritting my teeth. There are things that you have to do in recovery that are hard and challenging and upsetting – and, sometimes, you just have to grit your teeth and remember that the feelings will pass. So, if I want to spend time with my friends without food spoiling the evening, I need to get on with it; and, if I’m in a meeting at work and lunch consists of a platter of sandwiches, then I have to remember that work is part of my future and push on through. It gets easier, though it starts off feeling impossibly hard.

There is no right or wrong way to recover

I spent a long time looking for this. It does not exist.

Different things work for different people, and different things work at different times. You just have to keep trying, if you can, because however impossible it feels, please don’t give up.

Nothing is impossible

I thought I would never recover. Enough said.

There is much much more….but we only had half an hour and it was hard to jump back. Please feel free to add any other ideas or things that made a diffference – because recovery is a lot easier if you’re not battling alone.

I have wanted to unpick each sordid secret and expose every unspoken rule. To break down the perceptions. To write myself into recovery. To say the things I shouldn’t say because maybe, together, we can help to make things change…

It is important, I think, to talk about these things.

But it is even more important to remember that eating disorders kill.

It is even more important to remember that eating disorders kill.

I am worried that I have diluted this message. That in the to-ing and fro-ing, I have blurred over this one, crucial point. That in the detail, and the dissection, I have forgotten to re-iterate the terrifying bottom line –

Eating disorders kill.

So, this is a reality check and a reminder. An acknowledgement of the cruel truth about eating disorders – but also, that recovery is possible and that there are people out there who can help.

There are people out there that can help.

It is a message that makes my eyes watery and my stomach, clench –

But it comes, along with the experience and hope of recovery, as the most important thing that I can write.

It is hard to challenge something when you’re cowering under its threats. These ones stick out.

1. If you don’t throw up today, you won’t be able to tomorrow.

Between the ages of 21 and 28, I could count the days that I didn’t throw up on my fingers. When I had my wisdom teeth out (2); when I was in rehab (1); during a(nother) hospital admission (1); my friend’s wedding (2); a night at my brothers (1); and 2 further trial runs in the lead up to the day that I finally stopped. Each time I decided to go for a purge free day, the eating disorder would get me, just at the last minute, with the taunt that it might all go wrong – and one day off meant there’d be no going back.

“One day”, it would say, “and then you won’t be able to tomorrow; and then what happens if you end up eating something really bad.”

I didn’t know – because I wasn’t given the opportunity to collect any evidence – what would happen if I ended up eating something really bad.

And so, for 7 years, I went along with the lie, because I was scared that it might be the truth; and I didn’t give myself the space to find out what would happen if I listened to the other voices instead. Nothing would have happened, I know now that I have tried, but the lie was designed to stop me from finding this out.

2. You can only start eating when you’ve stopped throwing up

I battled anorexia and bulimia. The anorexia came first – and the bulimia crept up a year or so later, blocking it deeply in.

One of the biggest fears that my eating disorder clung onto, therefore, was that I couldn’t start eating until I stopped throwing up. If I started eating, it would tell me, but I kept on bingeing, than it would be a double whammy and my weight would never stop going up. Meal times could only be considered, it argued, when the bingeing was under control.

For a long time, it had me in a stranglehold. Frozen: the anorexia, bulimia and me. Wait until I have stopped bingeing until I can start eating. Wait until I start eating until I have stopped bingeing. And round – and round – and round, for years.

It does not always happen like this. It is harder to stop bingeing if you are not eating and one mouthful will not automatically trigger a binge. You just need to muster up the courage to find this out.

3. Just in case

Sometimes, when I nearly made it through the post-meal danger zone, my eating disorder would urge me to throw it all back up again, “just in case”. “Just in case you have to eat something later”, it would say, “or just in case you need some extra calorie allowance”, or “just in case you need to, when you’re out, but you don’t pass a bathroom along the way”.

Had I waited, I might have learnt that “just in case” rarely happens and that waiting a few extra minutes might have seen me to the other side of the danger zone; but it relied on the fact that I would be too scared to do that.

The sneaky thing about “just in case” is that it quickly becomes a norm. That the margins for error become smaller and smaller; and, the more often you give in, the harder it is to learn that you’re responding to an illusion: that “just in case” is a fear – and not a reality.

4. Leeway

“Leeway” was the weight version of bulimia’s “just in case”. The “growing space” that my eating disorder convinced me to believe in, “because then, when you’re ready to put on weight, there won’t be any risk of you over-stepping the mark.”

When I was “ready to put on weight” of course went back to “when I’ve stopped the bulimia”; and you can already see the flaw emerging. It’s chicken and egg and maintaining the starvation, all over again….with the one, waiting for the other, to gain permission to begin.

It also meant, as I’m now beginning to appreciate, that it didn’t give me the opportunity to improve my chances of winning. There is a certain level of well-being that helps in recovery – and “leeway” certainly doesn’t factor this one in.

5. It’s all in the mind.

This one’s clever. My eating disorder was quite clear on the need to stop bingeing and purging. It understood, in theory, that gaining weight was part of getting well. It just forgot that, in order for things to change, there’d have to be some actions on the meal plan front – and things couldn’t just take place in my mind.

So I’d sit, metaphorically drumming my fingers on the table, waiting for the miracle thought to drop, and my body to miraculously recover – without realising that eating more is about quality, as much as quantity; and that just agreeing to change things internally would never be quite enough. I had plenty of weight gain meal plans to fall back on – but I thought I could do it “my way” and didn’t quite manage to break free.

Three meals a day was certainly an advance, and a big step after all the bingeing and purging – but three meals within a rigid set of limits weren’t quite what I needed if I really wanted to move on.

* * *

It is difficult to test whether a lie is the truth. It is hard to muster up the courage to find out whether the eating disorder is right or there’s room for negotiation; but, sometimes, when I hear my thoughts in other people’s words and I realise that they, too, are fully convinced of something that just can’t be true -

Well, if I can question things in them -

then I can question them in me, too.

I stopped eating. Lost lots of weight. Started throwing up what I did eat. And then added in some hardcore bingeing for good measure.

I am more aware, now, of the different diagnostic criteria, and how they’re all subtyped and divided. I don’t think they were so defined, when I started out, so I mistakenly assumed I was unique…

Or I simply wasn’t prepared to listen.

And so, instead, I seemed to inhabit a lonely kind of middle land, where the one – cancelled the other one – out. I am not anorexic because I binge and purge – and I am not just bulimic, because if you take away the bingeing and purging, there’s certainly no other eating going on under there.

Neither behaviour would admit to the other – and the denial certainly wasn’t challenged by me.

Over the years, the layers built up, like concrete, with one behaviour solidifying on top of the other. The longer I starved, the more my body craved food; and, the more I reacted to the craving, the harder it was to remember that my body was starving.

I would focus, when I had the energy, on a particular dimension, like trying to reduce the bingeing – only to realise that I was too damn scared to eat. Then, I’d swap to trying, slowly, to edge the food intake up; but I’d panic and find myself purging or crashing into yet another binge.

Each side would negate the existence of the other; so, more often than not, I’d end up convincing myself that both diagnoses must be wrong.

Deadlock.

And so I got stuck.

I didn’t rocket from one extreme to another. They just came together and exploded, daily, in the same space; and, instead of dealing with the root of the explosion, I spun around trying to work out which symptom to hit first.

The bulimia always won out, in theory. It was expensive, and messy, and shameful, and degrading – but the anorexia, underneath, and the wasted body that I clung on to, kept triggering it back in. Round and round and round.

Eventually, I stopped fighting and agreed to a stalemate. No food during the day – and bingeing from 7 to 11. Split down the middle: a lethal truce.

You can stay there for a long time, though it feels like death and treads frighteningly close.

The world moves on, around you, while you’re pinned between two brick walls, screaming to break free –

Until the prospects become so frustrating that any progress, however imperfect, is better than the hopeless to-ing and fro-ing -

And, the focus shifts, almost imperceptibly, from a battle against the different behaviours, to a war against the illness, as a whole.

I think that this was where my recovery begun.

It is embarrassing, at 30, to be informed of what a tampon looks like; and I am beginning to get a bit concerned now, that even though I’m weighing in near normal, they have not made a reappearance. It feels like a kick in the teeth. After I have done so much hard work and changed myself, beyond all recognition, my body still won’t play ball.

So, instead of feeling like a woman, which I’d quite aspire to; I feel like a swollen child. And, whilst I know that I’ve had issues with growing up, I now feel trapped in this horrible in-between body, where I certainly wouldn’t be considered a girl – but I’m not quite a woman either.

Forwards – or backwards?

At the moment, I just feel stuck.

My consultant considered my situation quite specific: he didn’t have any research to hand.  My GP is optimistic: he believes that body’s can heal. I’m not so sure.  It will not just have to heal: it will have to leapfrog straight over puberty  – and I imagine that’s quite a flight.

So, at the moment, I am neither here – nor there – and I’m not sure which direction I’d rather be heading in.  I have kind of enjoyed teetering on the peripherary of womanhood – but then the teetering has made me aware of just how much I am still just skirting around the edge.

This presents a bit of a dilemma: do I take the risk of going forward, because an extra few pounds might just be enough? Or, do I give into the lure of tiptoeing backwards, because at least I might feel a touch more comfortable in my skin?

The latter is, of course a non-option; the former something that I can’t quite take in.

So, for the moment it’s a stalemate that has got me frozen in the middle, and I’m aware that the old feelings of paralysis are starting to creep back in. The next step is a terrifying leap into oblivion; and behind me, an illusion that has already been laid bare.

The only problem, this time, is that I don’t have another 17 years to decide on the best decision; and, I don’t want to wake up, when I’m nearing 50, and realise what I threw away.

So it’s forwards – or backwards -

but at the moment I’m somewhere horrible in-between.

Provided with some great opportunities by Professor Janet Treasure, I have spoken to students, professionals, and general bods; and, found it a remarkably rewarding process and a real way of being able to change a few perceptions.

Whilst I am quite open to speaking to the converted or those willing to listen; I have, perhaps, been a little more cautious with the wider world. I am selective with who I mention my site to, guarded with what I do on my ‘days off’, elusive around my past and my work, and very careful not to provide any ammunition or gossip –

Ammunition or gossip?

There is still a cloud of stigma around eating disorders. Still a slight fear and that awkward silence when people aren’t quite sure what to say next. Still the misconception that it only affects “certain people”, and not necessarily the man or woman that you sit next to at work (and “is far more sensible than that”) – or the relative who’s become a little quiet (“but doesn’t look that thin”) – or the son or daughter or brother or sister that you dearly love –

This week is eating disorder awareness week and I’m going to start being a bit braver. It’s all very well talking to those who already ‘know’, but raising awareness is also about reaching those who don’t know.

It’s a difficult challenge and I’m not sure how you start changing things; but, I imagine that speaking candidly is one way; and owning the experience, another…

This is the podcast and video (link opens in an external site) of the presentation that I have been giving with Professor Treasure about my perception of the media in relation to eating disorders. It contains some brilliant information about the science and background of eating disorders, which is key to helping people to gain the information which will change perceptions and improve understanding.

We have also talked about maintaining factors and, whilst there wasn’t a camera on at the time, please email me if you’d like the transcript and slides.

In an attempt to be “good” (which I was a little hung up on), and to prove my self discipline (which seemed to be lapsing), and to convince myself, once and for all, that I could stick to my guns; I decided that a period of abstinence was a great way of putting myself on the straight and narrow -

Chocolate was the starting point (because everyone else was doing it), and puddings and fat were thrown in for good measure (because I was convinced that I was already on the way to hell).

And so, out went “bad” foods, like cakes, and biscuits, and sweets, and anything that exceeded the finger-in-the-air fat limit (10g); and, in came “good” foods, like müller lights and quorn mince and anything labelled “fat-free”.

It doesn’t take long for an eating disorder to kick in.

Anorexia wasn’t as common as it is today; but, by Easter, it had made itself at home. The end of Lent did not signal the sense of achievement I had anticipated; and the flake egg that I still remember 17 years, evoked an inexplicable terror, rather than a welcome release.

As Lent approaches and I can feel myself getting a little tense, I have been reminded of the dangers of misplaced terminology, and noticed that I am a little over-sensitive to the notion of “good” and “bad” food, or the idea that saying no to chocolate is a sign of virtue.

And, as I am still trying to deal with the 12 year old me’s messed up ideas around food, and deserving, and how to be good; I am instinctively adverse to the suggestion that giving up chocolate, or chips, or “bad” things, should be considered a “good” thing, particularly around children –

Because mixing food with morality can get a bit messy; and, confusing what you eat, with who you are, will often end in tears.

And, I am a case in point.

In the moments of quiet, when I’m trudging up the stairs to my lonely flat or clutching my stomach in the middle of the night whilst it spasms, backwards and forwards, then I wish that I could reclaim a little of what I have lost –

This is the aftermath.

This is what comes after the terror of change – and then the exhilaration of release – and then the deadening thud of reality.

This is the shaking myself up, and dusting myself down, and surveying the damage bit, where the consequences are becoming a little clearer and the costs a touch more dear.

It doesn’t disappear without a trace, you see. It leaves scars, and holes, and unexpected reminders –

An ankle that folds when it’s exerted; teeth that wobble slightly more than they should; muscles that give way where muscles shouldn’t give way; and a stomach that is wreaking its revenge –

And, whilst most of the time I’m just grateful to be still standing and I don’t – for one minute – forget how much I do still have; it is hard, sometimes, to not sense the ravaged landscape behind me and the trail of destruction which lies in my wake.

So, I’ll keep heading forwards (because what other option is there) and I’ll try not to look back (because the past can not be undone); but, I am beginning to realise that the legacy is as cruel as the illness –

And that the aftermath is a twist at the end.

It is difficult to answer this now, when the reality of so many lost years feels like an open wound, and, if I could go back and violently shake my previous selves, I would.

It is hard not to turn to myself and say, yes, Melissa, what exactly did you think you were gaining from choosing an eating disorder over the things that most people aspire to, like jobs and husbands and families and friends…

Maintaining factor 1: Oblivion

A choice is only possible when you have a this – or a that. I didn’t see that. It was not there, when my eating disorder was this. There was no job or husband or family or friends because my eating disorder was my world and nothing – other than food and weight – featured on my radar. I didn’t know what I was missing, and I didn’t have time to find out –

Maintaining factor 2: Obsession

After ten years or so, me and my eating disorder had reached a comfortable living arrangement. Our days were structured, neatly, around a restriction and bingeing schedule, which helped me to remain satisfyingly underweight, whilst also feeding the hunger that raged throughout the day. It is, on reflection, quite hard to reach this level of disordered eating. You have to put in time, and effort, and a lot of careful preparation; and, whilst you’re busy working it all out and keeping in going, life goes on around you.

Without you.

Maintaining factor 3: Opportunity

This one’s a little controversial, but I’m feeling reckless. Maintaining factor 3 was ‘because I could’. As well as taking time and a certain level of personal commitment, my eating disorder also relied on a level of financial investment (bingeing ain’t cheap); the complete negation of normal expectations (well who’d hire a walking skeleton?); and, the ability to create a lifestyle completely apart from other people (no questions asked, no explanations required).

When there’s nothing to challenge the behaviour – which happens when people give up – and there’s no need to change the routine – which is possible when benefits kick in (sorry), it’s easier, and a lot safer, to stick with what you know –

Maintaining factor 4: Fear

You know when you’re a child, and you do something wrong, and you suddenly realise that you’re in really really big trouble, and it feels like the end of the world. That is the level of fear that anorexia awards to eating. It is primal.

And, you know the sudden panic when you lose your wallet, and the emptiness when you’ve had a slight disagreement with your best friend, and the terror when you’re asked to do something that feels completely unachievable. That is what the thought of giving up bingeing feels like when it has been at the centre of your world for so long.

Even when I started wanting to change, I was far far too scared to make it happen; and, as well as having no idea of how life would feel, I had absolutely no idea of who I’d be.

Maintaining factor 5: “Nothing” (aka self esteem)

Without me, you will be “nothing” and “nobody” and, worst of all, “totally unremarkable”…because with me you are “special” and “safe” and, most importantly, “somebody”.

You may not be attractive, but at least you’re thin; and, you’re not particularly funny, but your self control is up there. Clever? Maybe, but we need to keep an eye on that arrogance. Boring? Well, yes, but I don’t mind that…

This is what it used to say, when I tentatively suggested that life might be a little better if the whole food issue was a little smaller. It’s how it got round the ‘let’s just see how I look with a few more pounds on me’ discussion, or the ‘maybe I don’t need to throw up today’ debate.

After so many years, I didn’t have any evidence to the contrary.

Maintaining factors 6 plus

There are more – stubbornness, proving a point, addiction, testing the boundaries, institutionalisation – but I only have twenty minutes to speak.

And there’s something about the timespan and the gradual solidification of the eating disorder’s tentacles that would be interesting to explore, on another occassion –

Because I wouldn’t like to think that somebody else out there has fallen into a pattern that only becomes harder to break and tougher to wrench yourself from…

And I wish I’d put my foot down a little sooner and knocked each factor on the head, one by one –

Because they can be moved – rather than maintained – even if you don’t believe that it’s possible.