Tuesday 8 May 2012

Possible telly interview again, out come the cribbing notes...

I hate being on the telly but if it's going to raise awareness of teenage boys and eating disorders, then so be it - only I'm not sure whether or not this latest interview will be happening. Like all these things, it's always 11th hour and rushed which I find hard to deal with because I like to prepare for things properly, especially with a topic as serious as anorexia in boys. I thought the Lorraine Kelly show appearance was 11th hour but this could be even more 11th hour. I managed to get my voice heard on Lorraine Kelly, but can I do it again?

Last time I scribbled down a shedload of stuff which I wanted to say. Unfortunately I didn't get the time to say 99 per cent of it. On the telly I described the background to Ben's eating disorder and when we first noticed things weren't quite right. I talked about how we, as parents, had no idea that boys got eating disorders as well as girls, so we were totally unprepared.

I talked about the length of time it took to persuade our GP to refer Ben for treatment followed by the bombshell that we'd have to wait up to 6 months for a first appointment. I talked about how anorexia doesn't just affect your weight but takes over your entire life. It affects your mood, it isolates the individual, it made it impossible for Ben to be in school. But this is as far as I got on the Lorraine Kelly sofa interview before my few precious minutes were up.

I never got time to explain how I had to go through a massive learning curve so I could get to know this incredibly complex and much misunderstood illness inside out. Heck, we 'anorexia parents' have to know as much about eating disorders as the professionals, ironically sometimes more so if you don't get a good treatment team. They've had years of training in eating disorders and mental health issues; we get just a few days or weeks cramming, reading books and surfing the Net - and during this time we're desperately watching our beloved child disappear down the rabbit hole at a rate of knots.

I never got to say that it's so difficult to sift the wheat from the chaff - the fact that there's so much rubbish about anorexia out there; so much hype and misinformation. But when you're new to this thing, how the hell do you know what's right and what's wrong or downright dangerous - or where to turn for help?

I never got to explain how desperate I felt without any support. The medical profession had just dumped us in a waiting list and left us to flounder. Thankfully I had the very excellent school nurse on the case who told me what treatment was available and how to go about getting it here in the UK. But, for the first few months, that's all I had.

I never got to explain what a lifesaver it was when I eventually came across the FEAST website and its forum, Around The Dinner Table. Finally I had found a group of fellow parents of young people with eating disorders, supported by a team of brilliant professionals from across the globe who know their stuff back to front, inside out and could point me in the right direction, towards the right kind of treatment and the right kind of information, not to mention supplying as much emotional support as I could handle.

I never got to explain that, unlike other serious and potentially fatal illnesses, you are essentially your child's physician throughout, making it trebly important that you know your stuff and know what to do - and what not to do.

Let's face it. Your child sees their therapist for, what, 60 minutes max a week? Outside that time they're with you, their parent, and a heck of a lot of damage can be done in that time unless you are equipped to fight the anorexia yourself using methods that have been proven to work for other families.

Imagine the crazy scenario of sitting back and just letting things take their course over those other 167 hours a week while you let the treatment team do all the work in those 60 minutes? (Yes, that's essentially how it used to be done in the 'bad old days', believe it or not.)

And I never got to talk about my blog.

Basically, I never got to explain that my purpose - aside from getting Ben through his anorexia - is to prevent other parents from having to go through the massive learning curve which I went through: to point them immediately towards where they can find the right kind of help and they couldn't make a better start than by registering on the Around The Dinner Table Forum and introducing themselves to the other mums and dads.

PS: Yes this interview is going ahead, here at my home tomorrow with a view to being on Sky TV News at the weekend. Watch this space...

1 comment:

  1. thank you for speaking up. As one recovered from an ED, it's important for me to hear the parents' voice in my role as an advocate.

    Lori (FB ANAD Lori Licker)