Wednesday 8 May 2013

I realised I was jealous and angry

Having talked to 20 families for my new book When Anorexia Came To Visit: Families Talk About How An Eating Disorder Invaded Their Lives (published this summer), it became clear that some families had received an exemplary approach to treatment from start to finish - from GP through to eating disorder recovery. Others had received a haphazard, slow, messy, outdated and often counter-productive approach. Guess which approach was more successful?And you know what?

I realised I was JEALOUS of the first group.

I also felt ANGRY.

Jealous because I - and many of the other families in When Anorexia Came To Visit - received the second type of approach. But it took us all a while to realise what was going on and then we had to fight with all the "but I'm just a parent" emotions as we dared to challenge the professionals. We ended up fighting the eating disorder, fighting for our child and fighting the system - all at the same time. And, meanwhile, we were fighting to learn as much about the latest evidence-based treatment for eating disorders as possible in a crazily-paced cramming session that's like the Reduced Shakespeare Company on steroids. We were forced into being the unwilling CEO for a Gordon Ramsay's Kitchen Nightmares sort of business, slaving against the odds to get our child through this illness while being hindered by incompetent and ignorant teams at almost every stage.

Angry because it's our children that are being affected. We're not just talking about a bad cut that gets poorly treated by a nurse then gets infected so your child needs a course of antibiotics and maybe some remedial first aid to put it right; we're talking about their lives.And not just the fact that an eating disorder can steal years from a young person's life, but the fact that it can steal that life. In other words, eating disorders kill.Oh I could go on and on with comparisons with other life-threatening illnesses like cancer along the lines of "if it were cancer we wouldn't expect haphazard, slow, messy, outdated and counter-productive treatment" but I won't.

I will just say that I feel JEALOUS and ANGRY.

And I don't doubt that quite a few of "my" families who received the latter approach also feel very BITTER. Especially where their child's recovery is still very much a "work in progress" or where they feel completely stuck.

Oh I know I could also go on about the fact that eating disorders are notoriously difficult to treat, that a one-size-fits-all treatment is never possible and that a treatment team that works for one family may not suit another. Blah blah blah.

Which brings me around to my final emotion: SADNESS. Although I want to celebrate with the families that have told me their success stories, I want to hug the families who feel as if they're banging their heads against brick walls of all varieties - from poor clinicians through to a particularly challenging and complex case of anorexia, sometimes with co-morbid issues going on as well. I feel so very sad for these lovely families who had so many hopes and dreams for their beloved children only to find themselves entrenched in years of hell.

But hopefully these "works in progress" will soon become success stories and I'd like to return to these at some point in the near future, maybe in a year or two's time, to see how things have progressed.

All of the above are why I want to get When Anorexia Came To Visit: Families Talk About How An Eating Disorder Invaded Their Lives in front of the clinicians that need to read it.

1 comment:

  1. I'm curious - do you consider Ben to be in the latter group in terms of poor recovery/outcome, as well as in terms of treatment?

    I reaaaally hope your book finds its way into the hands of some GPs and other professionals...