A missed opportunity to help other families facing a deadly eating disorder

A few weeks ago, I was interviewed for a national newspaper about eating disorders in boys and to talk about my son's battle with anorexia and eventual full recovery. I'm so grateful for that opportunity to raise awareness of the fact that boys and men get eating disorders like anorexia. But then another publication contacted me, also wanting to raise awareness that boys get eating disorders. I said yes, I'd be happy to be interviewed. But it's not going to happen, and here's why...

More from my Notes.docx file from autumn 2009...

Part Two... of some notes I kept as a record of what was going on in the lead up to Christmas 2009. 

Ben's emerging eating disorder had begun to be evident during that summer and by autumn, I was desperately trying to get him diagnosed with anorexia and referred for eating disorder treatment. 

I'm wondering if any of this rings a bell with you, if you're worried your son might be developing an eating disorder? That's why I've decided to publish this document. It's quite lengthy, so this is Part Two.

I've already pointed you to the FEAST website and Forum - here's a shoutout for the FEAST Facebook group!

FEAST (which stands for Families Empowered and Supporting Treatment of Eating Disorders) was a lifesaver for us when my son, Ben, was sick with anorexia and the support I received on the FEAST Forum (also known as the Around The Dinner Table Forum) from other parents and carers was so incredible it makes me want to cry. 

I forgot to mention that there's a FEAST Facebook group (which you need to apply to join as it's a private group) which is fantastic for raising quick questions and getting excellent answers and support from the other members. So I just thought I'd do a quick shoutout for it!

Do any of these symptoms and behaviours ring any bells with you?

I've been looking back on some notes I kept as a record of what was going on in the lead up to Christmas 2009. 

Ben's emerging eating disorder had begun to be evident during that summer and by autumn, I was desperately trying to get him diagnosed with anorexia and referred for eating disorder treatment. Everyone was noticing the marked difference in Ben - from family through to school teachers. 

I'm wondering if any of these symptoms and behaviours ring a bell with you, if you're worried your son might be developing an eating disorder? That's why I've decided to publish this document. It's quite lengthy, so this is Part One.

What I said to the CAMHS nurse, 12 months into my son's treatment for anorexia

In March 2011, my son Ben had been with CAMHS (Child and Adolescent Mental Health Services) for 13 months. During this time his weight had fluctuated, but by Month Thirteen I was panicking because Ben's weight had DROPPED by several kg compared to his weight on Day One of CAMHS treatment just over a year before. Indeed in February 2011, 12 months into treatment, Ben's weight had reached its lowest-ever level since his eating disorder began. 

I needed to sit down with CAMHS and have a serious talk about what we should do about it.

The only chance I got to talk with his therapists was to do this while Ben was present during the CAMHS sessions which was far, far, far from ideal, as you can imagine. After each session the team of two would disappear in a puff of smoke, rushing off somewhere else. We weren't permitted to phone or contact therapists direct and had to rely on admin staff to leave messages in their pigeon holes, hoping they'd call me back.

Frustrated and scared, in March 2011, I wrote a letter to the CAMHS nurse. 

'The eating disorder is taking its toll on all of you... take a break from it and have a relaxing family holiday,' they said...

My son, Ben, was under the treatment of CAMHS (Child and Adolescent Mental Health Services) from February 2010 until he reached the age of 18 in 2012. The treatment was old-style - talking Ben into 'wanting to recover', allowing him to know his weight gain or loss and also allowing him to be in charge of his own meals. Although I was included in some of the 60-minutes-a-week sessions, I was definitely not seen as an integral part of his recovery from anorexia - except as someone who should keep quiet and let Ben do things himself, his own way.

Or the eating disorder's way.

What caused his / her eating disorder? Was it something we did as parents?

The nasty comments on my article in the newspaper on Friday almost exclusively point the finger at me, Ben's mum, as the reason why he developed anorexia as a teen. Overprotective or controlling mother, bad family dynamics, emotional neglect, even abuse, a reliance on the medical profession to diagnose him when I 'should have known' what to do myself. The list goes on...