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The Real Experts on Eating Disorders

Ilona Burton

1.6 million people in the UK suffer from an Eating Disorder. That’s over half the population of Wales.

It’s also almost definitely a massive underestimation; secrecy comes hand in hand with living with an Eating Disorder so many cases go undetected. Many others slip through the net due to mis-diagnosis, naivity and quite simply, a huge and disappointing lack of understanding.

The statistics may be unreliable, but we know for a fact that there has been a huge increase in children developing serious problems with food and weight, a rise in males suffering from a range of Eating Disorders and more older people being diagnosed and treated for Anorexia, Bulimia and other related mental illnesses. It can be argued that numbers are rising as a result of (finally) a shift in the way we feel and talk about such illnesses; if the stigma surrounding saying “I’m Bulimic, I need help” is decreasing, then perhaps it is just a case that more people are able to confront their problem rather than hiding it. I think we have a mixture of both, and it is an amazing thing that we’re moving towards a more open and honest approach to Eating Disorders – but we’re far from perfect and I know for a fact that there are still tens of thousands of people wasting years of their lives to an illness which could and should have been either prevented or detected early enough to treat more successfully.

Now, no matter how we look at it, there is more demand for treatment at a time when the coalition government cuts mean that funding for services is being slashed, NHS reform is causing confusion, instability and uncertainty, and GPs continue to pass off early symptoms of Eating Disorders as “just a phase.” That phase too often develops into a year, a decade, and for many, death.

A tiny lump in a breast or testicle is treated with immediacy. Dodgy looking moles are whipped off and tested within weeks. No doctor in their right mind would wait until a tumor reached the size of a tennis ball or until a melanoma turned malignant. Why play the waiting game with a mental illness? The outcome is the same. The longer the illness is left untreated, the more severe and ingrained it will become and the harder (and far more expensive) it will be to treat. Hear that Cameron?

dec 031 300x225 The Real Experts on Eating Disorders

As an ambassador for B-eat, the UK’s largest Eating Disorder charity, I attended a training day yesterday with other young people who have suffered, or are still suffering with an Eating Disorder. Together, we had one focus – how to must successfully raise awareness of Eating Disorders and make it known to others that they can be beaten. B-eat Young Ambassadors work with the media, MPs, schools and other organisations and campaign for changes not only in the way people perceive this kind of mental illness, but to challenge the way different people deal with them and suggest what could be done to improve the, let’s face it, pretty depressing situation we find ourselves in.

I am increasingly aware that I and all the other amazingly energetic and inspirational ambassadors can give presentations and arrange workshops and PSHE discussions with school children or preach about recovery to a groups of inpatients until the cows come home, but to really have an impact we need to address a much wider audience.

It’s the teachers, the dinner ladies, school nurses, social services, dance teachers, swimming coaches, parents and right at the top, GPs.

We are the experts.

We may be young, it may feel condescending to be spoken to by someone more than half your age and we may not have medical degrees (though a surprising number do), but what we do have is experience and passion. We have been there, gone through hell and possibly still are – but we will do anything we can and go to the ends of the earth to try to prevent others from having to do the same.

I constantly moan and preach and speak of my frustrations at peoples’ lack of understanding – but I do that sitting on a massive brown beanbag with a brew and a sherbert Dib Dab. Yesterday’s meeting lit a bit of a fire inside me. I love to write but I also need to do.

It seems daunting, approaching GPs and groups of teachers asking them to swap roles and allow me to teach them – but it feels like this is the way forward. We are told that we learn from experience, so even the most intelligent consultant psychiatrists in the world can learn from us if they themselves have never walked in our shoes.

This week I am going to be writing to a number of groups, organisations, schools and MPs to put forward my ideas, but it would be really helpful for me if anyone who is reading this could have a bit of an input. What do people need to learn? If you suffer or have suffered with an ED, how would you prefer the subject to be approached by teachers, GPs etc? I would also love to hear from anyone working in the medical profession who could give me an insight into what kind of training is available etc?

Thank you, and I’ll keep you up to date!

Experience: that most brutal of teachers. But you learn, my God do you learn.

C.S.Lewis

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  • DrSarahElNeil

    Hi Catherine, your article is refreshing and so very on the button.
    The genuine understanding of the difficult, sometimes conflicting thoughts, the fears and the complex interplaying factors need to be asked about, understood and worked through with the individuals full participation and not tackled with a preachy approach which can miss the core of the issues. It is sometimes just confusing for a person when tackling all the various factors and thoughts that are part of their experience and -there also needs to be space and empathy that helps a person to calmly find their way back to trying to move forwards. Also the approach needs to help a person in a very complete way while also preserving their dignity and life structure eg schooling, friendships, family relationships and social life. Getting better can then really feel positive and not like a sentence or imprisonment. An environment of kindness and natural beauty while also being very professional and expert in its care is the best way, in my opinion, of supporting what can sometimes be a very tough journey.
    I am a Consultant Paediatrician with an Integrated Practice and Clinic which sees many people with Eating Disorders – you are very welcome to contact me if I can be of assistance to you. Very best Dr Sarah El-Neil drsarah@drsarahelneil.com

  • http://www.facebook.com/profile.php?id=1218488927 Rachel Jane Lloyd

    I just read this as I am off to bed! But, I will save the link and have a think about the things you ask at the end :)
    And yes, I believe, like the Americans, who seem to be totally clicking with this, that the experts are you and me.
    In the States there are now so many treatment centers run by those who had eating disorders, and now actually hire those who have recovered as their main employees.
    This country is so backwards in that respect and actually, and from experience, show great stigma towards those who have recovered working for them.
    If I am like many others who have recovered, there is no way in this earth I would work on wards or as a clinician, if I did not fully believe I was recovered.
    I now consider myself fully recovered from my eating disorder, and would have no issue working with sufferers. Hence the B-eat self help group I facilitate.
    If I at all felt I was struggling, I would be so aware of the potential damage to others, I would stop.
    I will give an example, the North West Centre for EDs refuse to let me do any training with them, or work for them, because I was a patient there.
    I had treatment there over ten years ago, and they won’t even let me do some of their training days.
    It is madness.
    If I can be ‘profiled’ by B-eat and considered well enough to run a group, why can I not do training.
    I was ousted from working on an adolescent ward because I had self-harmed and patients figured it all out. I mean, they are not stupid! Takes one to know one and all that.
    I think in this country, and especially with all the cuts, we need to be breaking some of this bloody stigma and use people like you and me, to do this work.
    I was infuriated last week at SS v SS and I just felt that all the work, money and energy that B-eat use, and then a show goes and does exactly what B-eat fights against. hence my big ass complaint to the producers.
    Young people, need other young people.
    We can be related to.
    We can be mentors or ’sponsors’ as they have in AA.
    Schools need projects like the Dove scheme.
    We need to listen to what is a new wave of eating disorders, who are mainly pressured by societal standards of perfection.
    We have to step away from biology and listen to the societal issues that impact so many now.
    We need to expand the boundaries of what an ED is. We need people to see themselves in the illness rather than believing they are not sick enough…
    I could go on but I am falling asleep.
    Great article :)


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