#EDAW2018 Why I waited...

Why wait? That's the theme of this year's Eating Disorders Awareness Week. New research by Beat found that on average, people with eating disorder symptoms wait 149 weeks before they seek help. That’s almost three years, 37 months or 1,043 days. Well,

I am not sure if this is acute symptoms, you know, the weight loss, restrictive diet, loss of periods..etc...or the wait between first feeling like absolutely shit about yourself, not good enough, hating your body, cutting out bits of food and exercising a little out of guilt? Because if it is the latter things, I reckon my wait was about 1015 weeks, or 7109 days - that's 19 years, 5 months, 17 days.

So why did I wait THAT long? Okay for the first 8 or so years, I admit, I was getting help. But for anxiety and phobias, all to do with food, but never for anorexia. So, obviously, I didn't have an eating disorder*  (*allegedly!) 

Later on, and definitely from about 2009, like it or not, I honestly believed anorexia served me, that it made sense, that it was helping me deal with life around me. It was making me feel pretty damn good at the time. I waited because, firstly, I didn't think I had an eating disorder and then because of that feel-good feeling it was giving me. I was high on it I waited because I didn't want someone to take that feeling away. Why would I?

Of course, everyone who suffers with an eating disorder will have a different experience and varying reasons why an eating disorder developed in the first place and a whole host of different barriers for waiting to speak up. Some from inside, others because of the world around us.

For me, maybe it's also because no one else ever really mentioned a specific eating disorder as something I was suffering from. After all,  62% of adults are twice as likely to list weight loss or being thin as a sign of an eating disorder over any other. so if I wasn't underweight, who was going to mention anorexia, of all things?

I felt like a fraud for even being signed off work for stress and anxiety, let alone because I was suffering with some sort of 'eating disorder'. So, I wasn't going to be the one who brought up my low calorie intake, my now obsessive exercise regime or the hours I spent on Pro-Anorexia forums, or the nights I spent body checking and weighing myself. I waited because I was doing 'just fine' in my eyes. 

The way that an eating disorder feels likes it serves a purpose to the sufferer means it's unlikely to be us that speaks up first. The fake sense of friendship and security my 'lifestyle' gave me was the reason I waited. Honestly, I didn't want it taking away. So, I didn't believe it was anorexia back then, even though I knew the symptoms, and was logging on to forums where 'ana' and 'mia' were spoken about.

To stop this delay between first psychological, and sometimes physical symptoms, of an eating disorder and someone getting help, it has to be then, down to more awareness. More people need to know the signs and how to talk to the person showing them.

I reckon I would have kept waiting to speak up if it wasn't for a close friend calling me out. Saying the word 'anorexia' for the first time. Then, family helped stop the plates spinning and I move home. At this point, whether I believed it was anorexia or not, I was finally sick of waiting. Sort of. Because once I'd decided this, I had the wait for assessment, the wait for diagnosis, then for the effects of treatment to kick in and the wait for acceptance that I actually had anorexia.

A lot of waiting, right?

Moral of the story is simply that waiting until crisis or just waiting longer than we should reduces the chance of beating an eating disorder. It is waiting that benefits no one but the eating disorder.

For me personally, I am thankful I had people around me that DID know the signs and symptoms and spoke to me because at that time I would have waited so long, that I would possibly been dead. Looking back I wish that I had spoken up sooner about what was going on, wish that I hadn't waiting to break up with 'ana' and get help....don't let you or someone you know make the same mistake as me. 

#WhyWait #EDAW2018 

- How to tell if someone has an Eating Disorder CLICK HERE

- Get help: Beat Adult Helpline: 0808 801 0677 Beat Youthline: 0808 801 0711

Little ripples will cause waves of change

We need to talk about mental health, that much we already know. But I'm going to go out on a limb here and guess there are millions of people with stories of struggle and suffering, but also of recovery and strength hidden away inside them. 

It's these stories the world needs to hear more of so that perceptions of mental illness change, so the stigma is smashed. But how can people find the courage to speak up? Who goes first? Well, here's a thought...what if that person was you? 

I could reel off a compendium of quotes which remind me why I talk openly about my battle with anxiety and anorexia, my favourites are "You have to be brave with your life so that others can be brave with theirs" and "be the change you wish to see in the world."

It's reading about other people's recovery which first inspired me to be open about mine. I knew hearing about their fight gave me hope I could do the same. Knowing I wasn't alone battling with an eating disorder was comforting. I realised that I shouldn't be ashamed about it. It helped me find my voice, it made me realise it's Time to Talk. 

Since the day I realised this, my aim has not been to cause waves with my voice alone, but to inspire other's to find theirs, to join in and create their own ripples. To speak up. Today I felt this ripple effect.

Through my own recovery blog and tweets I met a young woman in Staffordshire being treated at the same eating disorders unit as me. When we first hugged, she was frail, broken and scared. She had no voice, she was fearful of her own mind. I could see myself two years prior right there in front of me. Since then, she's fought (hard) to find that hidden voice, the courage to be herself.  Why am I telling you about her? Well, today she's the focus of a week-long 'Exploring Eating Disorders' special on Signal 1 News. 

This is the power of the ripple in action. Through me talking openly about eating disorders, it's reassured her it's okay to do the same. This is the first time Sarah Pustkowski has been this open with her mental health problems. It's still not easy to talk about mental health, that's why we need to keep fighting and talking.

It was powerful for me as a journalist to interview her and I have no doubt that in her finding her voice and sharing it on the radio to more than 300,000 listeners, her ripple will be contributing to the wave.

Sarah and I enjoying recovery together.

What I do know is that each contributing ripple makes a difference. We can't create world-changing waves alone, nope, but if everyone who shared their experience of mental illness inspired just one other person to be brave, we'd have a tsunami on our hands. 

You go first?

***
Listen to the EXPLORING EATING DISORDERS news special HERE
Get help from BEAT (the eating disorders charity) HERE

***

FOOD FOR THOUGHT: “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and those ripples build a current which can sweep down the mightiest walls of oppression and resistance.”― Robert F. Kennedy

Whispering about eating disorders in Westminster

When I have my mind set on doing something, it often becomes hard to stop me striving to change the thing  I feel passionately about. That comes in handy sometimes.

And there's not much that comes close to matching how determined I am to raise awareness of eating disorders and push for quicker access to specialist services for people trapped by them.

That's why at the start of last year I wrote to my local MP Jeremy Lefroy, during Eating Disorders Awareness Week, urging him to listen and to take action to change things here in Staffordshire and right across the UK.

We're lucky in Stafford to have an excellent eating disorders service, but even our neighbouring NHS trusts are still short of the specialists and when they do have them, the challenge is getting access. Quickly. Even The Royal College of Psychiatrists say the level of specialist care out there is not good enough. 

If nothing else, I hope other services can learn from the multi-disciplinary approach I know I'm lucky enough to get. I know cash is short, but when eating disorders alone rack up healthcare costs of £80-100 million every year and affect at least 1.6 million people, it's got to be worth investment, right? 

If we think of the wider economy, eating disorders cost an estimated £1.26 billion in England alone. Shocking, yet preventable. 

Jeremy Lefroy (second left) with the EDU team at SS&SFT and me.

Since writing, I've met with Mr Lefroy at his Stafford office, he's visited my EDU, met with staff and learnt more about how things work here - I'm trying to arm him with enough of the facts to take the issues to the top. The very top.

And that's what he and I did, we arranged to meet with the inspiring Brooks Newmark, MP for Braintree, who's also an eating disorder survivor himself. 

So, in November I caught a train to London, hoped off at Westminster, jumped feet first into the heart of Parliament and met Jeremy and Brooks at Porticullis House, avec an large americano, of course. 

We discussed the findings of Beat's shocking Waiting Times research, which highlighted more than a quarter (26%), that's one in four sufferers, have to wait longer than six months before they're referred to a specialist OP service, in which time many people's desire to recover reduced. 

I shared my experience and was able to hear first-hand about Brooks' own battles and why he is also keen to keep eating disorders on the agenda, and of course we spoke about ideas for change.

Brooks Newmark MP

Of which I have lots, firstly education, education and more education to break down the stigma in schools and arm teachers, friends, parents and doctors with the facts to provide early intervention. Who could argue that this would be a way to PREVENT eating disorders from taking control at all? 

But when they do start to ruin lives? Well, that's when the Government needs to ensure the right services are in the right place and at the right time. It would cost the NHS a lot less to treat the early signs of eating disorders, than it does right now to rescue people from crisis.  

This is what I want to keep at the forefront of politicians' conciousness, until we can see changes to the way eating disorders are viewed and until more people are getting help, sooner. I can't do this alone, and knowing who they know, and with me pushing from behind, I'm sure both MPs can ensure our voices are heard in the right ears. 

There is much more to do and so much more to say, but as I think both Jeremy and Brooks have already realised, I'm not going anywhere any time soon.

I will go to Parliament, speak openly, tweet and meet as many people, as many times as it takes until I feel change is happening. 

Just you watch me. 

Genetics, Birthdays and Anorexia

The potential of understanding a little more about anorexia? Finding genetic links, causes, gosh, dare I even say it, one day, a CURE? 

I've read a little about the international AN25K genetics initiative (ANGI) but when people mention genetics, DNA and science my head spins a little (more) so I won't pretend to fully understand, but I do like the sound of it. (I'll say it again, the possibility of discovering a CURE for an illness that's plagued my life and so many millions of others.)

So, what should we know? Why now? Well, for those of us who were better at analysing a poem than understanding genetics at school, know this. Charlotte's Helix launched today and wants to bring the research project to the UK;  

"The goal is to add at least 1,000 DNA samples from individuals with a lifetime history of anorexia in the UK to this international genetics initiative. Under the direction of Prof. Cynthia Bulik, AN25K has the ambitious goal of collecting 25,000 DNA samples in order to"crack the code" that makes some people predisposed to an eating disorder."

But like anorexia itself, there's much more to it than that. It's complex

What makes this project poignant is the drive to launch AN25K this side of the pond is coming from Charlotte Bevan. A woman whose daughter has suffered from anorexia nervosa. A woman who has been told by doctors that she's only got around six months to live. A woman who has dedicated time to eating disorder advocacy work and supporting others. 

You're probably wondering what birthdays, of all things, have to do with genetic research into a mental illness? Well, if you haven't got pennies to help, how about using your birthday? 

Take a look at this video from Laura Collins Lyster-Mensh from F.E.A.S.T (Families Empowered and Supporting Treatment of EDs) to find out a little more. But basically, it's a birthday pledge to either send a donation to Charlotte's Helix, spread the word to friends and family or sign up to AN25K. Or all of them. 

I really like this concept and I'll be donating the 15th March. 

However, like any research, this also takes money. The project's being backed by BEAT, who are helping organise the pots of cash and supporters from around the world. 

If you CAN please DONATE HERE or DONATE YOUR BIRTHDAY or if you have suffered, suffer or are battling anorexia, find out how you'll be able to ADD YOUR DNA.

Personally, if a little vile of my recovering over-tested blood can help teach the world a little more about anorexia, I'm in. You never know, one day 'cause and cure' will be obvious to everyone and anorexia will be a hell of a lot less confusing. Even I might understand it. 

Learn more about Charlotte's Helix;
Charlotte's Helix Official Website
Charlotte's 'Chatting and Chuntering' Blog
CH on Facebook
CH on LinkedIN
Follow Charlotte's Helix on Twitter

BEAT, FEAST and other ED advocacy projects, bloggers and charities are linked from my recovery blog;  Dream, Recover, Live.

Talking Anorexia & Busting Myths

How are more people going to understand eating disorders? How are more people going to be able to ask for help? How are we going to keep mental health in the forefront of MP and doctors minds?

Answer: We need to keep talking about it. (or shouting about it where necessary!) 

Break the Silence of anorexia. Talk about it.

Let's be honest, they're pretty damn complex and confusing, for the sufferer and everyone else.

 But a fear of the unknown and misunderstanding of eating disorders does two things; It traps sufferers in silence, scared of being judged for their illness and it creates a stigma around what eating disorders REALLY are and who really suffers. 

The only way to tackle both head on is to start conversations, educate, expose talk and try and get our heads around the nitty gritty, often sensitive and scary issues surrounding eating disorders. 

And that's what I did today. 

You can hear my open and honest interview about my own battles with anorexia with Perry Spiller on BBC Radio Stoke for the next 7 days on the BBC iPlayer HERE  (or click the logo)

If you're struggling with an eating disorder or are worried about a family member or friend please get help and get in touch with someone:-

BEAT - The UK's eating disorder charity 

Mind Charity - The mental health charity

Team Recovery - An online support network of 'Recovery Ninjas' I co-founded

If you're a fellow 'media lovie' who'd like to SHOUT about mental health and talk about eating disorders, please, please take time to read Time to Change and BEAT's Media Guidelines.

Everyone mentioned here can also be found on Twitter. 

Mental Health Awareness Week 2013 - "Let's get (less) physical..."

Just one more mile, think of the calories you’ll burn.

Swim 10 more lengths, you know you’ll feel better.

Get out of bed earlier, your stomach will be perfect eventually if you squeeze in 200 sit ups.

Why are you getting the bus, it’s only 5 miles. Walk it Sarah.

You’re not cycling enough or hard enough or fast enough. Pedal.

Body pump, spin, pilates, yoga, boxercise……and every other class. Booked on. Attended.

These are just some of the reasons getting physical is not something that could have helped improve my mental health, in fact, the drive to keep on moving did the very opposite.

I'm (thankfully) living proof that collapsing in a gym is not classy, nor is it cool to not have the energy to peel myself off the floor of a 6am pilates class. While I'm at it, nearly drowning in front of three gorgeous lifeguards was not my finest hour. 

It’s what I think sets anorexia aside from many mental illnesses, getting active could in fact be the very thing that kills you. It could have quite easily become the thing which finished me off during the depths of my illness.

Two years into my recovery and I am still unsure of where I stand on getting physical.

The drive to burn calories is still there. The concept of ‘eating to exercise, not exercising to eat’ is still rather foreign to me. I can still hear my destructive inner voice convincing me that burning calories is the whole point, why on EARTH would I replace them? Silly Sarah. 

I haven’t stepped into a gym since starting treatment, I’ve been swimming once and couldn’t help but blast out five extra lengths. (I didn’t go back.) I booked on to an early morning Body Pump class a month back, but thought better of it. 

It's not all doom and gloom. I have ‘earned’ the privilege of starting an adult ballet class after a year of weight restoration (and pleading to my team!) I am confident dancing is more therapeutic than it is driven by my eating disorder. I rarely think about what I am ‘burning’ while practising at the barre – (the truth is I am trying to keep up with the steps and French words!) ‘Sarah’ DOES enjoy going and practising my pointe, but that doesn’t mean I don’t feel guilty and lazy when I have to miss a class. I do.

That's me on the left, all cygneted up!

The same guilt I get for staying at home on a quite Sunday. The same guilt that still makes me feel bad for getting a lift instead of walking. All little things, like a walk in the hills or a stroll with friends which I can see could boost the mood of someone feeling low, but to me, there are still the thoughts back to ‘earning the food’ I eat. Anorexia taints this too.

Recently, it’s not the first thing I think. Instead, it can hit me mid walk or during an afternoon playing with my niece. Even cleaning my apartment for an hour. It’s the thought that I’m having a ‘better day’ or ‘feeling better about myself’ because I'm active, I'm being more energetic. That's great, I hear you say, you SHOULD feel better about yourself. Au contraire, I'm very aware it’s an anorexic lie lingering. I feel better because I am not being lazy.

It’s way more subtle than being an obsessed slave to a treadmill, it’s not a compulsion to burn calories any more  it’s the mind-set that an ‘active’ day helps justify the food I eat. It makes meal times a little easier. 

(for Ana)

People have suggested pilates and yoga to help my mindfulness, yes, that’s got to be a way a recovering anorexic can get ‘physical’ right? Honestly, I can still only see them as things I ‘HAVE TO’ do or ‘SHOULD DO’ if I want to make my body better. Still not the point, it’s not going to help my mental health to force myself to go, or feel lazy if I don’t.

It’s got to be an inner switch that gets flicked, the difference between exercising for enjoyment or exercising under Ana as some sort of deranged a personal trainer, I guess.

Don't get me started on the jealousy of people that can exercise and ACTUALLY enjoy it. I've always been sporty and seeing the rest of the world participate in physical exercise doesn't really help my self-esteem. 

I like to think this is work in progress, that I will find a way to enjoy getting physical, being active, enjoying a walk or maybe even a jog one day, but for now, I'm realistic about how far I have to go, I’ll keep using physical activity as my carrot to fuel my recovery journey. 

So, while I’m a huge advocate of getting physical, while I can see the many benefits of exercise and activity for so many, this year, I’ll  have to sit this one out and I hope others recovering from anorexia manage to take a break, and realise that getting physical in recovery possibly isn't the best idea. 

Right now, the only marathon I'm participating in is recovery. You up for it?

What do you think? Are eating disorders the only mental illnesses that don't always benefit from getting physical? How did you find the balance? 

To find out more about Mental Health Awareness Week 2013 and how being active can benefit Mental Health visit Mental Health Foundation's website.

RECOVERY POEM: The Longer It Goes On

Another insight in to the mind of a recovering anorexic...

This is a poem I wrote three months into treatment, but looking back, I wasn't quite ready to recover. It was the first stage in my recovery where I was needing to JUMP and turn weight loss in to weight gain. 

It sums up the constant debate and confusion that someone choosing to fight anorexia nervosa feels and has to fight on an hourly basis, especially in the contemplation stage. 

It was one of my lowest points and hardest periods in the last 3 years, both mentally and physically and the anorexic voice still consumed me...But I did JUMP from here and it WAS worth it.  I hope some of you are able to relate and JUMP for yourselves too.

Recovery is ..being pulled in every direction mentally...

The Longer It Goes On. 

The longer it goes on,

The harder it gets,

The longer I stall,

The less I forget.

The fuller I feel,

And the less I weigh,

The harder it gets,

To keep her away.

The more I hold on,

And the longer I stall,

The harder it gets,

And harder I’ll fall.

I don’t want to listen,

And I don’t want to care,

But whenever I try,

I still feel her there.

There when I think,

There when I talk,

There on the scales

And there when I walk.

She’s there when I try,

And there when I don’t

There when I eat

And there when I won’t.

I take steps away,

I run, jump and hide,

I block out her voice

But she’s hiding inside.

Waiting to grab me,

Waiting for control,

Stood there judging me,

Waiting for my soul.

I’m speaking my truth

And exposing her rules,

I’m trying to fight

And using the tools.

The tools I have,

And the strength I can find

To get back my body

And retrieve my mind.

 (c) Sarah Louise Robertson Nov 2011