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Dear Eating Disorder

Dear Eating Disorder

I write with good news! We have won the battle and defeated you!

Ten years ago you appeared in our lives, uninvited.  I didn’t know your name then, but I knew I didn’t like you. 

But how times flies! Because today, Eating Disorder, I’m ready to tell you, we are over you.  No longer can you overpower us, or ruin our lives.  Yes, you’ll always be there, in the background, a mild menace, but we no longer fear you.

Every single day for ten years, we have been fighting you.  You’ve made life more difficult than everything else difficult in our lives added together.  We know you are not a conscious decision; you are not an infantile phase. 

You are real and you are deadly. You are misunderstood and stigmatised. You’re a malevolent being and your invasion into people’s lives is damaging and destructive. 

Those early months and years were the worst. 

We tried everything they told us to, and more.  Mashing, blending, playing, messing, adding, eliminating, smelling, touching.  We were told you were a ‘phase’; we were told you were ‘picky eating’, and we were told you’d be gone before long.  They were wrong.  You were going nowhere and getting more powerful.

You introduced us to your friends: dysphagia, oral-motor, gag-reflex, aspiration, neophobia, and sensory processing disorder, and we disliked them equally.  You made us social zombies, and nervous wrecks.

We cried, shouted, pleaded.  We read, researched, challenged.  We contested, campaigned, self-funded.  We travelled hundreds of miles, made new friends and advocates.

And as time went on, we forged a way forward.  Your presence was waning!  We found strategies, we unwound hardwiring, and we developed new neural pathways.   We found trusted foods, and worked with trusted people only.

Slowly, slowly, we progressed, and we didn’t look back. 

We took tiny steps, guided by our instincts and our tiny army of specialists, and empowered by our progress. 

Days no longer revolve around you; we have become braver and more adaptable.  We now no longer fear mealtimes, and sometimes we even celebrate them!

You’ve given us our very worst days, and our very best days.

Today, we eat together, the four of us, and you no longer have a seat at the table. 

Goodbye, Eating Disorder.  It was not very nice knowing you.

From Jenson, age 10.

Some very important people to credit for helping us in this journey:

Rebecca Blinkhorn

Gemma Zarifeh

Clarissa Martin @ Midlands Psychology CIC

Anna Willis @ Active Play Therapies

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emily Sutton

Meet Our Blogger

I was launched into the world of special needs on New Year's Eve 2012, on the birth of my son, Jenson. He is fabulous, sprightly and loving, and has redefined our lives. I am now a 'qualified by experience' therapist, clinician, secretary, taxi, PA, nurse, and in my spare time I am trying to be a good mummy. I am an auditor for the NHS and along with my husband run an accountancy business from home. It's a busy household but Jenson's extra genetic material seems to have given us all extra special powers!

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