An education in eating disorder services

It started with a tweet to my local MP during Eating Disorders Awareness Week in March, urging him to think about the impact of eating disorders in his constituency, my home town. 

The tweets and letters resulted in a meeting with Jeremy Lefroy back in April to arm him with the facts, figures, reality and seriousness of eating disorders, in a hope that he'll be able to raise HIS voice in future parliamentary debates. I'm determined that with his help, we can keep it on the Government's agenda and  he can support the work I want to do here in Stafford.

Sharing my experience obviously turned to talking about the care I'm currently getting at South Staffordshire and Shropshire NHS Healthcare Foundation Trust's specialist eating disorder service, The Kinver Unit in Stafford. As well as the care I've NOT had elsewhere. But I wanted him to meet my team and see it for himself.

That's what happened today. 

From L-R; Jennie Collier, Jeremy Lefroy MP, Dr Rob Dennis, Me and Service Manager, Fiona Preston.

Jeremy Lefroy and I met with Fiona Preston, Service Manager (who just happens to be my dietician too!) Kim Moore, Nurse Consultant, Dr Rob Dennis, Consultant Psychiatrist and Jennie Collier, the Head of Children's and Specialist Services Directorate. 

It was a chance for introductions, to tell Jeremy more about eating disorders in general and for him to get a taste of what the service does and who it helps. But also who CAN'T get support and who the service can't reach. The gaps, the issues, the funding....and we know health and hospitals are hot topics in Stafford right now.

We spoke about eating disorders, treatment, services, commissioning groups, prevention, education and how this service has developed and how it can improve. All starting points for the future. Mr Lefroy saw first hand the kitchens, art rooms, garden, bedrooms and dining room playing a part in turning round the lives of his constituents suffering with such destructive mental illnesses. 

From the point of view from someone who's fighting back at anorexia, I want to make it clear that I think more awareness and education is needed to catch the illness sooner and to help prevent it consuming people like it did me, and so many others. 

Yes, today he saw what a successful, established eating disorder service looks like and how it works and the challenges it faces, but wouldn't it be nice if it was needed less? 

There are so many things tackle when it comes to eating disorders, it's overwhelming to think of the mountains left to climb to help save lives and slash the stigma. But I figure using my voice to talk about the hills I'd like to take on first was a good place to start. This is just one of them.

So, watch this space, because I'm not stopping this conversation any time soon...

If you are worried about eating disorders or need to find a service near you, please contact UK eating disorders charity B-EAT  ASAP.

EDAW '13 - This much I know

I've poured both my heart and head out this week to help raise awareness and break down the myths around eating disorders and shed some light on such dark and secretive illnesses. 

I've written, filmed, asked, talked, shared and ranted. 

I’ve panicked, believed, cried, listened and doubted.

I have found where my own understanding of my eating disorder ends. 

But now the fight continues. My fight, that is. 

I’ll do the same for EDAW 2014, when I hope I understand a little more about myself. And maybe I can write that final post, after all, I'll be 365 days closer to freedom. 

Until then PLEASE keep talking about eating disorders, ask questions, support, try to understand, keep fighting, keep believing, challenging and thinking.

Be a friend, be you, be there, hold on. I will be doing the same.

Remember that eating disorders ruin lives, they consume sisters, friends, brothers and mothers, but don’t forget that 46% of people have already proved that anorexia can be beaten, eating disorders can be prevented.

And this is not how my story ends....

That much I know. 

EDAW '13 - Anorexia's Ricochets

“From the outside looking in, it’simpossible to understand. From the inside looking out, it’s impossible toexplain…”

Fear, frustration, anger, agony…the list goes on. 

Anorexiacan draw out a thousand emotions for the person trapped inside the illness, amillion things they can’t explain to anybody, no matter how hard they try. Butit’s not just the person suffering who feels these things.

Despite being a private, secretive, guarded mental illness... 

anorexia’s ricochets hit every single personaround the sufferer....

No one issafe from the destructive emotions which run alongside an eating disorder. Ittears apart lives, friendships, families and relationships; anorexia has nomercy in who she takes down on her mission to make the sufferer disappear.

It’s near impossible to clear the fog around why someonedevelops anorexia, why they live with it and why they can’t see what it’s doingto them physically and mentally. It’s agonising for someone with anorexia toexplain why and (I’m told) the frustration in trying to understand why your daughter,friend, sister or aunty has spiralled into self-destruct mode, and then, whenshe speaks up, why she doesn’t change what’s killing her, is as equallyagonising.  

The battlefield in explaining and understanding is EXACTLY what anorexia wants. It keepsthe sufferer alone, isolated, feeling frustrated, worthless and guilty. Theexact feelings the illness feeds from.

“Why can’t I make them understand, I don’tunderstand, I’m not good enough to explain, I can’t show them I’m trapped, I’mstuck in here, I’m rubbish, I’m hurting them, I’m a horrible person and I can’tstop. I’m out of control, I need control.”…and so it spirals.  

As a teenager, student, a professional journalist, an adult,I was scared to tell them how serious the ‘I’m too fat’ or ‘I don’t eat that’thoughts were. After all, I appeared fine and healthy on the outside.

I couldn’t say the words ‘I have anorexia’ when I wasformally diagnosed and I couldn’t explain to my heartbroken friends why Icontinued to disappear in front of their eyes or to my family, why I ‘couldn’tjust eat’ once I was ‘in recovery’.  Forme, the desperation in trying to get everybody to understand kept my trapped mein my illness and continues to halt my progress in recovery.

But in this desperation to explain, as well as the all-consuming habits and thoughts anorexia brings, I suppose I became blind and ignorant to how I was affecting those around me. And I still am, in some ways.

For those reading this WITH anorexia, I hope it highlights how your illness might be impacting on the people who helplessly watched you disappear or who are trying to support you in recovery. And for the friends, family and colleagues of someone battling anorexia, I hope some of the words of the people around me provide a ‘me too’ moment, which gives you hope that the fog isn’t permanent,and it WILL slowly lift. Mine is lifting day by day. 

I’ve been overwhelmed with how honest, varied and howsimilar some of the experiences of the people around me have been…This video containsjust SOME of the things they’ve shared, and are just SOME of the people around me, I wish I could have spoken to everybody that's close to me. (They know who they are)  But I hope this helps raises awareness of whatit’s like for the people around someone fighting anorexia…This was the hardest thing I've ever produced and written.... 

NOTES: I've blurred the images of friends and family and this video contains a mixture of images from BEFORE anorexia took control, during my illness (but not *triggering* or lowest weight pictures) and more recent 'recovery' pictures. I wanted to use a variety and mix them up. 

EDAW '13 - Becoming AWARE of ourselves

Eating Disorders Awareness Week's about raising awareness of eating disorders, breaking down stigma and opening up conversation about serious and secretive mental illnesses. But, there's another 'awareness' which I feel under-pins recovery from an eating disorder too.

Self-awareness; Knowing what thoughts lead to which feelings, how we react to social situations, to success and to failure. Building self-awareness is still something I'm striving to do in my own recovery.

Those people with an eating disorder will know all too well how EXHAUSTING this part of recovery is, you become AWARE of what is 'eating disordered', which thoughts and behaviours are destructive and what may have triggered them too. But re-wind, the first step in recovery for me was to think about who I was, why I react in certain ways and to think about my 'character'. What makes me, me?

This piece of work was one of the early things I wrote for my therapist and I've not shared it until now.

I was asked to write a self-characterisation. How I would DESCRIBE me, if I were my BEST FRIEND. At the time it was the hardest thing to do, I was lost in my illness and didn't know who I was - or so I thought. But reading this back today, it makes sense - it's me, it's exactly me? Which proves underneath the layers of disorder, this woman has always been there, it was just covered in anorexia's web and becoming aware of my character and my personality, helps me understand where anorexia could jump in and claim to 'fix' it for me.(N.B. It doesnt!)

Maybe it would be good for everyone, eating disordered or not, to think about this too...

Self-Characterisation

Me in 2010 - What was REALLY happening behind those bug eyes?

(Written in September 2011) 

She is a complex character with a lot to say. She’s not afraid of speaking up about her opinion or voicing her complaints or comments when she wants to. Although, sometimes you have to sieve what she says for effect or to be contrary, from the bits she really feels or means honestly.  Her likes and dislikes can change from day to day or hour to hour and it can sometimes be exhausting to keep up.

On the surface she seems driven and focused on achieving her ambitions and dreams, but it is clear to those that know her that more often than not she is trying to convince herself that she knows which path she’d rather be on. This uncertainty in her own thoughts and ambitions can almost seems like she’s out to prove something to everyone around her and to herself.

One of Sarah’s major struggles is her inability to live in the here and now and accept things for the way they are. She almost seems to live in the past, always dragging up old emotions, blaming herself for things that were sometimes not even her own wrong doing, without even realising she’s doing it.  She blames herself for things that sometimes weren’t even her fault and she convinces herself they were.  If she isn’t playing old events and situations around in her head, she’s planning and worrying about the future. Worried about whether she is ever going to be able to reach her high goals of getting what she wants or whether she is going to mess it all up.

Sarah’s need for control is clear for us all to see and she even knows the extent of her desire herself. All is fine and well until the control is taken away from her and then if that dreaded situation ever occurs, her mood can switch quickly. Her defences go up and her tone becomes less open and chatty and becomes more argumentative and defensive. It almost seems that the loss of control over a situation is too much for her to handle and the barriers go up to protect her weakness.

This can also be seen when Sarah doubts the value of her opinions or if she or her work are criticised. It doesn’t stop there though, Sarah joins in and her habit of being her worst critic comes into action. To those who don’t know her, this is more than likely to be perceived as an inability to take criticism on board, even if it is constructive. But it’s quite the opposite. If you get to really know her you’ll understand that it is because she is her biggest critic and tortures herself for not having done something perfectly in the first place.

Her chatty personality comes across as confident and bubbly on the surface when faced with social events but the internal monologue she is used to hearing paints a very different picture of her. Sarah seems unable to stop comparing herself, physically and socially to anyone who comes into contact with, even her best friends and family. She can almost seem envious or jealous of those around her and her competitiveness ensures she can’t accept being the one no one else envies.

Sarah might not be the prettiest the richest or the most ‘career’ successful of her friends, but she is also not the one with a husband, house or child.  Most of the people around her can accept their ‘place’ in society and accept themselves, but not Sarah. She can’t accept any of it. It is almost as though she doesn’t feel good enough in any of these areas, never mind achieving her goals of being the one they envy.

Sarah, at 26 years old, has only recently realised the extent to which she has managed to keep up her internal conflict of control and self-doubt whilst portraying a driven, independent and confident woman on the surface. It is only after unpeeling some of her layers that you realise that those moments of defensive comments or the times her mood switched or that day she snapped, were pockets of herself hate seeping to the surface in moments of weakness. They are the moments when you realise that she is not she strong as she seems.

EDAW '13 - Talking about MY anorexia

So, it's day two of Eating Disorders Awareness Week 2013 and I am sharing a 'vlog' today as part of my challenge to talk about eating disorders in a different way everyday to raise awareness.

Despite being stuck in the epicentre of anorexia, I  learn new things about eating disorders and associated mental health problems every single time I talk to someone about it. Everyone has a different explanation, reason, habit, strength and weakness. I also learn a lot from listening to myself.

Today I listened to what my eating disorder was screaming (it does that!) and to what my dietician was saying and what I was thinking after 'coming out' about anorexia and saying 'those' words....I HAVE ANOREXIA....and this vlog is about what I've learnt and my pledge for the future.

Keep talking and keep reducing the stigma surrounding eating disorders. It could help somebody more than you think...

EDAW '13 - 'Spotlight' A poem about anorexia

An edited version of a poem I wrote in September 2011, describing my personal battle with anorexia.  From its tiny whispers to the way in which it ripped my life apart. I am sharing this as my first post to help raise awareness during Eating Disorder Awareness Wee 2013...

Spotlight

My thoughts and your rules,

Take over control,

You’re constant abuse

Dents and damages my soul.

Every mirror, every picture,

Every thought, every meal

You’d tell me it’s my fault,

And how I should feel.

As you came a little closer,

I accepted you in,

I welcomed your friendship,

And let your control begin.

You showed me your dance,

And sang me your song,

It all looked so perfect,

I must have been wrong.

Your dance looked so tempting,

And your song so sweet,

Your rules, my obsessions

Your shoes on my feet.

Having you on stage,

Dancing my dance,

Your rules, your numbers,

I’d given you a chance.

But enough is enough girl,

I am awakening again,

I can see your faults

And have felt your pain.

Your drugs are wearing off,

And your feet look sore,

I can see you’re struggling

I’ll duet no more.

Your control is slipping,

And your time is up,

Your dance is becoming weaker

And the box office is shut.

It’s time for my solo,

My moment to shine,

So tie up your shoes, Anorexia,

This spotlight is mine.