No one will want to share a flat with me. I’ll spoil my professional reputation. I’ll become a source of gossip. There will be whispering and pointing and people will give me a wide berth on the street.

That kind of thing.

I nearly associated my response with stigma, then I realised that it is more akin to shame. I don’t necessarily need anyone else to point their finger or assign me with a name; I am already doing that myself.

I am already doing that myself – and yet the things that I am most ashamed of have also informed my greatest achievement: they come together hand in hand. The same experiences that nearly destroyed me have also made me who I am –

And in the act of exposing the illness, I have also exposed myself.

It is this bit that I am struggling with at the moment. It has got me in a bit of a stranglehold. I do not regret what I have written, nor feel the need to resurrect the wall between Melissa and Finding Melissa – I’m just a little afraid of what people might think.

I am also a little confused: “They don’t need to find out” makes everything a secret again; “Just don’t tell anyone” reaffirms the shame. And round we go again.

There is probably not an easy answer, nor one that applies to every situation I find myself in, or every person that I meet. I don’t know whether googling potential flatmates is common practice and my fears are grounded; or whether, actually, the judgments mostly belong to me. I have no idea whether careers fall on personal revelations, or whether there is a sign hovering over my head that will alert people to my messy past. I suspect not, and I have no evidence to support the former –

Just a little voice, echoing a few prickly memories from when I first became ill, that is proving hard to evict.

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.

It is like a stamp of failure.

I can understand, when I’m in a logical frame of mind, that the circumstances have not been conducive to a bustling buzzing social life, and that maybe I need to give myself a break –

But it’s hard not to take it personally –

And it hurts that the problem might well be me.

So I encourage myself to go out (because that’s how I’ll meet people); and try new things (because that will help me to connect); but it’s hard to shrug off the sense of rejection -

And I try and reassure myself that I am not fundamentally flawed (which is how it’s starting to feel); and that I have things to offer (which I’m beginning to doubt); but the embarrassment always seems to slip in -

Because loneliness comes with a stigma, even if I pretend it feels okay.

And rejection twists in the gut, like a physical pain.

We flock towards popularity, I think, like it’s part of the assessment.

And I assume, therefore, that I’ve failed to meet the grade; and lurk, bow-shouldered, under a heavy kind of shame. And I’ll admit, though it might make me shallow, that I tend to imagine that people with friends have a lot more to offer –

Then someone who struggles with loneliness, like me.

This is an important focus for anyone who’s been directly – or indirectly – touched by an eating disorder; and, for those who spend the remainder of the year campaigning, tirelessly, to change the misconceptions and put a few constraints on the terrifying spread.

There have been, therefore, some stories on the news; and some articles in magazines; and a scurry of activity, online, amongst the organisations and individuals out there who want to make a difference.

There are conferences going on; and new campaigns being started; and I have selected my five favourite recovery posts to highlight that it is possible –

Only it feels, slightly, like we’re talking to the converted; and, I’m not sure how the message will reach the many people who, without meaning to offend, can’t quite see the relevance…

Because anorexia’s a fad – or a fashion – or that thing that models get; cured by three good meals and a bit of common sense.

Bulimia’s “not something I can really relate to” – or gross – or great for getting your cake and eating it; but an illness? – no, and part of polite conversation – not really, thank you.

And EDNOS. What the hell are they?

I can see their point. If you’re not female, aged between 12 and 18, typically middle class and probably white – or have a daughter within this group – what’s the problem?

This.

According to statistics, eating disorders are on the up. They’re starting younger – and hitting people later.

Contrary to popular belief, they don’t mind if you’re male; and, aren’t confined to class – or country – or wealth – or race.

They’re wrapped up with food – but that’s just one dimension; the causes are complex and hard to pin down.

They’ll stay for a while – or cling on for a lifetime; at the least they’ll do damage; at the worst, they’ll cause death.

At the least they’ll do damage; at the worst, they’ll cause death.

Fortunately, part of raising awareness of eating disorders is about raising awareness of recovery from eating disorders, and making sure that people are aware of the help that’s out there and the fact that, despite how it feels, recovery is possible.

This is why we need to get the message out there; and reach the initiated – and the uninitiated; because, there’s a chance that we can reverse the trend – and limit the damage – and maybe even save a few lives, if we’re aware of what we’re dealing with and we’re working together towards the same end.

For help and support, visit the Getting Help pages.

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.

And if they realised, when they referred to him, derogatively, as ‘mental’, that my diagnosis could put my into this category, then they might have thought twice before trying so hard to be my friend.

If, when they joked about Prescott with his head down the toilet, they’d known that I too had spent over a decade in the very same position, then would they have found the situation as amusing –

And would they still have surmised that people with depression can’t handle responsibility – or that people with eating disorders are vain – or that mental illness is linked to stupidity – had they learnt that the person they were talking to had grappled with all three?

Ashamed.

And, this is how I feel when you hurry over any reference, or skate over the subject – when it comes up in conversation – as if the words haven’t been said –

Like I’m only half there.

When decency forbids discussion (because what would they think matters more than what I am feeling) and stiff upper lip reigns supreme (because I should just get a grip on myself), it hurts –

That my pain is negated and it’s more important that I perform a role.

And, when we don’t talk about “the problem” because we must pretend to be “normal”, it makes me want to –

Scream.

It’s hard to challenge centuries of mis-perception but I’d like to start by handing back a little of the –

Shame –

Which belongs to you – and not me; because, after years of lying about my past and hiding in generalisations, I’ve decided that it’s take me as I am.

And, the judgement –

Which I do not subscribe to, and I’m not prepared to maintain; because I’m not sure that we’re qualified to decide who meets the mark – and who doesn’t.

The hurt –

Is something I’ll be replacing with pity because it is caused by your ignorance; and, I don’t want it to hit you back, should you suffer a similar pain.

And the anger –

I’ll let go of; because, I understand that the illusion is yours – and not mine – and that the pretence is for you –

And does not belong to me.

We may not be able to lock people up as easily as we could 60 years ago, but the debate around power and freedom and what happens when you’re declared “unstable” still has currency.

I can kind of relate to Esme’s vanishing act.

It is hard to feel like a half person. When the discussion’s going on around – and about – you; you’re not always sure that you’re there and you’re certainly not sure that your contribution would count.

There’s something about mental illness that disempowers you in a way that no other illness can –

Something pervasive and unsettling that, in the attacking of your core and the questioning of your voice and the uncertainty over whether it’s you who’s speaking – or just the illness? – makes you wonder whether you are really there.

And, would you believe yourself, if you were?

Because, there’s the opportunity, in the diagnosis, for “it’s not you, dear; it’s your illness”; and there’s an ambivalence, in the location, that makes it harder to determine the bits that are me from the bits that are not very well –

And so you end up feeling like “damaged goods” (as my head used to call me), or “mental”, or “a bit of a liability”; and you end up concurring with the notion that “you’re not always there” and “you can’t always be trusted”; and, you end up kind of believing that you’re a half person who isn’t quite the same as everybody else –

I can understand Esme’s desire to disappear.

We might not be able to lock people up as easily as we could 60 years ago, but we can still make them feel like they’re trapped in stigma and ostracised from society.

And, we might be a little more empathetic and equal minded now, but the temptation to put it all down the illness, dear, is only one step along from negating the person –

Which happens, anyway, when you’re referred to as an illness, rather than a name –

And feels like its already started when you’re struggling to determine the bits that are me – from the bits that are not well -

Because if my story becomes my secret; then I will have something to hide and there will be a danger in the waiting to be caught out.

And because I’m waiting to be caught out, my story – which is now my secret – will become my shame.

If I do not tell my story; then I maintain the stigma – which is never a good thing.

Because if I do not tell my story; then, in the absence of a narrative and without the presence of a person, the stigma remains unchallenged.

And because the stigma remains, unchallenged (if I do not tell my story) then the assumptions and the fears will persist.

If we do not tell our stories; then we subscribe to an illusion that there is an acceptable way of being – which is never a good thing.

Because if there is only one story; then it negates my story – and your story – and their stories –

And, in the silence, the one socially acceptable story becomes a truth.

If we do not share our stories; then we might not realise that my story is similar to your story – and might help his story – and is part of her story.

Because if we do not share our stories; they become our secrets and our shame –

Instead of an opportunity and a connection.

I am slightly concerned that I may be positioning myself as the showcase survivor.

This was, of course, a distinct possibility when I started writing – but it has presented some interesting questions –

Like whether it is possible to articulate an experience – without being caged by it?

And whether the stigma is so strong that honesty is fatal?

And if this is drama – or discussion?

Articulating the experience –

There is a fine line between acknowledging an experience – and clinging onto it.

I am, quite probably, walking along the partition.

In each post or twitter or talk, I align myself with a condition and a state that I am desperately trying to break away from. In every communication or reference or introduction, I am recalling and referring back to my past –

There’s a bit of a worry that this is not moving on.

There have been a few concerns that I remain under the eating disorder’s shadow – even if the position’s altered.

It’s a possibility – but this externalisation and exploration might be part of the transition.

We are, in many ways, defined by our experiences; and maybe the sifting through what’s useful – and what’s better left behind – is the next step in the process?

Plus, if we all just walked away, nothing would change the perception or help the understanding; and, at least my experiences are being used positively now.

Providing that I don’t get stuck with the stigma.

Stigmatised? -

Mental Illness comes with a bit of a stigma.

Still.

We’ve moved on a fair distance – but acceptance remains precarious and we fear what we don’t understand.

Whilst eating disorders – with some famous examples and a lot of media interest – have probably got off relatively lightly, I’d be lying if I didn’t say that I’m still hitting a few unexpected barriers and encountering some strange misperceptions –

But keeping quiet just negates the experiences and perpetuates the myths.

Trying to avoid the stigma just gives it a power that it doesn’t deserve, and avoids a much needed dialogue and some real discussion – which takes us back to the articulating an experience question.

And raises the idea of how to do discussion – and not drama.

Drama – or discussion? -

There have been some interesting debates out there around whether featuring people with eating disorders in adverts or magazines raises the profile of the illness; and, whether the message is pro-recovery or not, the “no such thing as bad publicity” impression lingers.

The media presence at my first inpatient unit definitely made an impressionable 13 year old me consider anorexia as an asset – rather than an illness; and, there’s an inevitable leaning towards eye-catching headlines (‘How I Moved Back From Deaths Door’) or over-hyping (‘Kate Moss causes anorexia’).

The discussion is, however, hugely important – and whether it’s drama, or debate, is all about how it’s done.

And what you’re trying to achieve.

So, I’m trying to stick to the facts and the reality, without being drawn into the sentimentalisation or the hype.

And I’m looking at what needs to be said – in comparison to the gory details.

And I’m learning that, if you do it sensitively, you can bypass the drama – and reach the discussion – and jump out of the stereo-type.

Which is what this is all about.