Monday 16 April 2012

So this is what I plan to say (in case I don't manage to say it)...

Firstly, yes the TV is going ahead. Secondly, this is what I plan to say - just in case I get sidetracked, get stage fright or don't have enough time to say it...

Back in the summer of 2009 my son developed an eating disorder, but it was weeks before I realised this was happening. Yes, he'd been quite plump at primary school. He'd also been quiet and not very sporty, although good at rugby. Once at senior school he became very sporty. It was a school that encouraged healthy participation in sport and pupils who were good at sport carried a kind of kudos. Ben took up loads of different sports, the puppy fat fell off him, he became tall, handsome and athletic, and he became confident and very popular in his social group. He was positively thriving.

Then, over the summer of 2009, everything imploded. It happened gradually and never in a million years did I worry that my son might be developing an eating disorder. Eating disorders happened to girls, not boys. And, anyway, I held the popular (but incorrect) belief that these children simply need a stern talking to. "Just tell them to eat" and not be silly, and they would.

The quicker you nip these things in the bud the better the chances of a swifter recovery. With us, not only did it take ages for us to realise what was going on, but it took yet more time to persuade our GP that something was wrong. Then we had to wait up to 6 months for treatment to start. By the time Ben started to receive treatment it was 8 or 9 months after the first storm clouds had started to gather. Far too long, in my opinion.

Also, during this time, I realised I had to go through a massive learning curve - more intense than anything I'd done at university. I needed to know the latest eating disorder thinking and scientific evidence inside out. I needed to know what to do and who I could turn to, especially during those dark months before treatment started. Heck, I didn't even know what NHS treatment was available because the GP never explained it to me.

Also there's so much rubbish out there about eating disorders, and so much outdated thinking. You have to know how to sift the wheat from the chaff or you could end up barking up a wrong and potentially dangerous tree.

And all this while you're panicking at what's happened to your family and trying desperately to save your child's life.

On top of this, it quickly becomes clear that you, as a parent, are going to have to take the lion's share of your child's treatment and care. To all intents and purposes you become their physician. Remember, your child only spends 60 minutes a week or so with the treatment team. Outside of that time a heck of a lot of damage can be done, very quickly, unless you fight the anorexia or other eating disorder yourself, as a parent - using methods that have been proven to work for other families.

So you have to know exactly what to do - and then you have to do it. You have no choice. And whenever you feel you can't go on any longer, you have to find a second wind somehow - and third, and a fourth. You are in this for the duration whether you like it or not, because the alternative could be to lose your precious child to this potentially fatal illness.

Because all of this took a heck of a lot of time and energy, at a time when I could ill afford both because of the panic over how to rescue my son from this terrible illness, I want to avoid this happening to other parents of boys with eating disorders.

Through my blog I want to do everything in my power to 'fast track' other parents through this massive learning curve, to point them to the good information and support out there and help them avoid what isn't helpful or is plain destructive.

I also want to show that whatever they are going through, the chances are that other parents have been through it too - and to show how they coped. The Plan As, Bs, Cs, Ds... even Xs, Ys, and Zs - even to start at the beginning of the alphabet again if needs be... you need to devise to find solutions to an illness where logic and rational thinking has been thrown out of the window.

And which could kill your child.

We want our children to survive this illness and develop into happy, healthy, normal adults who don't relapse back into it. Anorexia has already stolen years from our child's life; we refuse to let it steal any more.

For those who might accuse me of being a 'control freak' or being 'overprotective' of my son, I'd ask what they would do if they found their child was suffering from a life-threatening illness. I'd hazard a guess that they'd fight tooth and nail and basically do whatever it takes, even walk on coals, to save their child's life as quickly as is humanly possible.

That's not 'control' or 'overprotection', that's love.

...Or I plan to say something along those lines.

Which is already far too long and a bit like a lecture.

I just want to avoid being dragged down the 'size zero media' route, or the 'diet gone too far' route - and to get across that eating disorders aren't just about eating - they're about all the other changes that take place in a child's body and mind as a result of the malnutrition.

The way it damages internal organs (e.g. when Ben's pulse went down to 29bpm... twice...) and bones. The way it can make children suicidal. And the way it can change a happy normal human being into someone who appears to have gone completely insane... day after day after day...

And the way that rational thinking and reasoning go out of the window.

Oh and, of course, the way it can and does happen to boys as well as girls.

Yep, something like that at any rate.


  1. Wow....just wow and the tears are welling - you are speaking for so many of us.....THANK YOU!!!!!! We don't know each other but I could just come and give you a massive hug right now and tomorrow when you are in the green room and on set....Go Batty Matty and Sue!! xxx

  2. I'm sure you'll do just great both of you, looking forward to seeing you. xx

  3. Wonderful! So many important messages you are sharing. I hope that the people in the USA who are working on a national health service plan take a look at what doesn't work - such as waiting 6 months for treatment. Or here where untrained professionals don't listen to the parent and 2 years go by before treatment begins. I know it happens everywhere and you are making a difference in changing that.

    Thank you for sharing how we as parents become a bit "crazed" in trying to save our children's lives...anyone would as you say.

    You are speaking on behalf of millions of us - no pressure just saying that to empower you.

    Can't wait to see the video.
    Becky Henry
    Hope Network. LLC

  4. This is really beautiful - thanks for sharing it. For my unsolicited two cents (I'm the broadcast journalist who commented on a post last week), a couple of pointers about getting it across successfully (which you should feel free to ignore!). First, I'd pick maybe three (short) points (like, almost in bullet point form) that you absolutely want to get across. Three doesn't sound like much, but the time will absolutely fly by (as I think you've realised) and if you get bogged down in the start of your story, you might miss important stuff at the end. Also, if you have three really firm points in your head, you can kind of gently draw the conversation back to them pretty easily. More than three key points and you'll inevitably be disappointed when you don't get through them all. Especially when you consider that, yes, the journalist will inevitably ask a couple of questions that you consider off-topic. You can answer them briefly and then go back to on of your points.

    Second, I know it must be really hard (and when I've been interviewed myself, I've found it really hard!) but try not to go in defensive (I'm not directing this at you specifically, just commenting on what I see most in interviews). I know you've probably had people giving you a lot of warnings, or telling you the interviewers will "try and get you to say X" or that the media is "all about Y". But on an interview like this, and on a station like the one you're going on, they're really just going to want you to sound good and comfortable... they're not going to be trying to trip you up. The biggest mistake I hear people make in interviews I conduct is that they want to talk about what the issue ISN'T, or to try and pre-emptively defend themselves or their issue about criticism... and then they're disappointed when they listen back to it and they sound guarded, or a bit cross, or negative. Going into the interview expecting that people will be on your side and trying to keep constructive and positive (even though this is a tough interview). I think it's easy to go into these things with a list of things the media will try and get you to say, but most of them won't even come up, and if you spend the whole interview pre-emptively rebutting them, you won't get through some of this beautiful stuff above.

    Third, journalists these days love to link to blogs/multimedia. If you feel comfortable with it, ask if they can throw up a link to your blog during/after the interview. You will be amazed how many people come here and read the whole story (guests we have on our station get loads of follow-ups to their blogs, etc).

    Anyway, hope that wasn't too much of a rant (and I hope it actually helped at all). I really just wanted to say that they are there to make you sound good, and the lack of time available is always disappointing to interviewees, but you've got such amazing things to say that it will be totally fine. Good luck!

  5. Beautiful and far from a lecture. In fact, I want to keep following you. I've wanted to learn more from the "other side"- the side of the loved ones. I also want to learn more about males and EDs. I've healed from an ED and now help others.

    If you (or anyone else) would like to follow me, I'm on Facebook. My page of recovery tips is called InsteadOfED. I also have an account dedicated to eating disorder recovery. The URL is listed below.

    thanks for all that you're doing. I look forward to your next post. If you join me at Facebook it'd be a great place for you to share links to your blog.

  6. So many parents will benefit from are so right about the "massive learning curve." We all need to get as much accurate education out there for parents as possible. Your words about parents taking on "the lion's share" of treatment and care are also true.

    I'm sorry your family is having to go through this, but you sharing your journey will help others so much. Especially those who have suffering sons.
    Lynn Moore
    Eating Disorder Parent Coach

  7. I cannot wait for this! I hope they give you enough time, rather than give you 3 minutes so they can have an interview with Katie Price!
    Annaliese Rose,
    Anorexia sufferer of 3 years