Tuesday 7 May 2013

My very first blog post on 5th January 2011

Recycled post #1: Wednesday, 5 January 2011 Only last night there was a programme on the TV reporting on the pressures of young girls to look stick-thin. But it’s not just girls that develop eating disorders. For the past 18 months, my 17 year old teenage son (who I’ll call "Ben" here) has been battling with anorexia nervosa and this new blog will be about our progress.

By coincidence, this morning Ben and I were comparing this January with where we were a year ago. The progress has been painfully slow; in fact I’d say things were on a serious downward spiral for the first six months of last year and, as anyone who’s lived with anorexia will know, eating disorders are jam-packed full of "false summits" which can raise your hopes only to be dashed back down again. But, after months of hell, I firmly believe we turned a corner three months ago in October 2010. Not a corner in terms of weight gain unfortunately, but a definite corner in terms of attitude change. But I’m not wearing rose coloured spectacles. I know there will be trouble ahead (as the song goes...). But in 2011, both of us are better equipped to deal with the anorexia than we were 12 months ago. Hopefully this blog may help other parents of anorexia or eating disorder sufferers who are where we were 12-18 months ago.

But first a quick summary...

It’s difficult to pin-point when Ben’s anorexia started. Ever since he moved to secondary school, he’d been an active and athletic boy. Before the anorexia kicked in he’d been a star player in the school rugby team. He also played for his local team. Pre-anorexia, he enjoyed squash, swimming, walking, cycling, cross-country and athletics. Being part of the sporty crowd gave Ben a kind of kudos. He already had his own close circle of friends, but being “the guy in the rugby team” earned him respect and admiration across the year group.

Anorexia crept in virtually unnoticed at some point during the summer of 2009 (although, looking back, the warning signs were there even earlier). By October 2009, we realised with horror that anorexia had entered our lives. By Christmas, Ben was locked into the illness; it held him like a vice.

In contrast, at primary school, Ben carried quite a bit of "puppy fat". He was quieter and was bullied by another boy. But once at secondary school and away from the bully, Ben threw himself into lessons, sporting activities and his new circle of friends. He was very happy at school and at home. The puppy fat disappeared, but in a healthy, normal kind of way.

Then in summer 2009 everything changed... Anorexia tempted Ben with promises of looking physically perfect. His role models became the Adonis-style men you get in men’s fitness magazines in the same way that girls might aim to look like the airbrushed, size zero celebrities or models you get in women’s magazines.

The only problem was that, in practice, it didn’t work out like this. Anorexia robbed Ben of his self-confidence, his self-esteem, his social skills and his sense of fun. He even lost his much sought-after "six pack" as the anorexia began to eat away at the muscles in his body. Although the green shoots of Ben’s anorexia had been germinating for months, it wasn’t until late September 2009 that the alarm bells began to ring in our heads. Ben was exercising more than ever and carefully watching what he ate.

He became increasingly interested in cookery. Crucially, he also started paying a lot of attention to what went into a recipe: calories, fat, etc and the word “healthy” crept into his conversation about food over and over again...

On holiday in France in July 2009 Ben was swimming 100 lengths a day of the holiday villa pool (mind you, he’d done that the previous year so we weren’t unduly concerned). But he was also going for a run every day, turning down all offers of ice cream, refusing to put butter on his toast, making his own pack lunches and increasing his intake of fruit and dried fruit.

When we got home he joined the local gym, went on lengthy and very gruelling runs, and started to see his friends less. This concerned us because up to then sleepovers, meals out, cinema visits and hanging out with his mates around town had been a regular part of his life. Ben also seemed quite subdued. He seemed to have lost his usual zest for life and his sense of fun.

Then in September my in-laws came to stay and Ben’s grandma immediately commented on how much weight Ben had lost. I guess when you see your child every day it’s not so obvious. She hadn’t seen him for six months.

The first time we took Ben to the GP he just said, “Eat more and come back in two weeks’ time,” followed by three similar appointments. In the end we insisted that Ben was referred to the specialist anorexia team at the (UK NHS) CAMHS unit (Child and Adolescent Mental Health Services). But then, to our horror, we were faced with a months-long wait for treatment. A quick calculation told me it could be Easter before we got help. I wanted to scream!!!

Over the next few months our family life underwent a complete shift from being a normal family to being a family coping with anorexia nervosa.

Anorexia had taken over Ben. Anorexia had taken over our family. And anorexia isn’t just about eating; it’s about a stack of other symptoms - like depression, panic, zero self-esteem, etc. I don’t just mean feeling a bit “down” now and again, I mean deep, dark depression and self-hatred. I mean banging your head against the wall, or thumping your fists against your skull, throwing things around and animal screaming kind of depression.

In the end we managed to find a private CBT therapist (Cognitive Behavioural Therapy) who provided a bit of “stop gap” treatment, but it wasn’t ideal.

But still the CAMHS waiting list loomed ahead. What state would Ben be in by the time our place came up at Easter? And how many assessments would we have to go through before the actual treatment started and, more crucially, began to take effect?

With anorexia it’s as if someone else moves into your head. Someone that taunts you all the time, telling you you’re fat and unattractive and that you’ll never be popular until you get thin.

Many anorexics give this "someone" a name. Anorexia is often named Ana, Anna, Rex or ED (Eating Disorder). One parent described anorexia as being like having a goblin on his daughter’s shoulder all the time. Some people even think of anorexia as a kind of “demon”. That’s how we came to think of it.

Anorexia has you pinching the skin on your skinny stomach, taunting you that it’s rolls of fat. Anorexia makes you exercise like mad and examine yourself in the mirror critically. Anorexia makes you hate what you see. Anorexia lies to you that it can make you ultra-handsome, ultra-slim and ultra-confident.

Anorexia lies that it can put you in control of your life. And part of this control is to control exactly what goes into your stomach, how much of it and when. The minute you deviate from this rigid eating pattern, anorexia lies to you that you’re out of control. Just one serving of dinner that’s not the “right size” and anorexia can have the sufferer banging their head on the fridge and screaming. I know, because that’s what Ben was doing by February 2010.

Looking at family photographs was a painful, instant reminder of what Ben used to look like and should look like, but didn’t anymore. We had a thin waif for a son who looked like a concentration camp victim and whose mood was so volatile I was terrified every time I picked him up from school for fear of how his day had been.

For any parent, watching your child suffer with anorexia is one of the most excruciating and painful things you’ll ever face. I just wished there was a magic pill you could take and - hey presto! - the old Ben would be back. I can tell you, we were been keeping the Kleenex manufacturers in business! Unlike a physical illness, you can’t take any medication for anorexia (apart from anti-depressants). You can’t have an operation and it goes away. Worse, the wonderful, level-headed, intelligent child you’ve spent 16 years rearing has undergone a total transformation into a volatile stranger whose very sanity seems to have gone AWOL.

You feel angry. ("Can’t he see what he’s doing to himself / us?!") You feel frightened. ("How long is the anorexia going to last? Will we ever get our boy back?") You feel frantic. ("What damage is anorexia doing to his body? Could something tip the balance and lead to the ‘S’ word we never mention and daren’t even think about?")

You feel preoccupied. (You can’t think of anything but anorexia and the situation.) You feel jealous. (“Why is everyone else’s child okay when mine isn’t?”) You feel guilty. ("Is it something we’ve done as parents? Should we have picked up on it earlier?"”)

Anorexia also makes you feel very isolated. Okay, there are anorexia help lines you can call and a fabulous forum called Around the Dinner Table which was a massive help to us. But it’s difficult to talk to a "lay person" about it; to the outside world it’s such a little-known, much misunderstood and even taboo condition. I knew virtually nothing about anorexia until Ben contracted it - now I’m an anorexia expert!

But living with anorexia is like living in a surreal world while the rest of the world goes on around you as normal. Around July 2010 – five or six months after Ben began treatment – his anorexia took a turn for the worse. It started with our summer holiday in France which was a nightmare with Ben resisting food intake and in a terrible, depressed mood. The rest of the summer holidays were a nightmare with regular threats of suicide. Ben even tried to climb out of the loft Velux window on one occasion.

The depression got worse, as did the resistance, and it was a real uphill battle to keep things afloat. Meanwhile Ben continued to lose weight; something which continued for the next few months as he headed to his lowest ever weight (but not low enough to warrant hospital admission).

Considering Ben had been absent from school since February or March, I was really nervous about him starting back in the lower sixth form in September. I was worried about the social problems (the previous spring and summer he’d found it virtually impossible to handle something as straightforward as walking across the playground or even sit his GCSE exams with his peers). I was worried about school dinners and the fact he’d be eating next to nothing. How would we manage them? I didn’t live locally so I couldn’t go into school to monitor them.

The first few weeks in the lower sixth form weren’t good. Ben avoided his peers like the plague and spent all his time including breaks, lunchtimes and free periods in the library, swotting. Meanwhile he began a brand new phase of not sleeping due to anxiety - and I mean really not sleeping; at the most a couple of hours a night. School lunches were predictably disastrous which resulted in me sending him in with packed lunches which also proved pretty disastrous as he was still resisting food unless actively encouraged by me being there physically.

It also didn’t help that some younger kids were making fun of him eating his packed lunches (no-one else at his school eats packed lunches). After a few crises, we - with the fantastic support of the school and at the suggestion of CAMHS - made a decision. Ben would go into school mornings only and come home for lunch. School would send home work for the afternoons and friends would lend him their notes.

On days when Ben didn’t sleep, he often missed school altogether. However his sheer determination to keep up with his peers, the fact he’s pretty bright and the incredible support of the school has meant that he’s not doing too badly at all. His grades are a bit lower than usual, but - frankly - who cares? The most important thing to me isn’t whether he gets straight A’s and gets into university; it’s that he eventually recovers - fully.

Things have improved on the social front - no more escaping to the library! In fact if it wasn’t for the sleeping problems and the school lunch issues, he would probably be able to be in school full time, without any of the nightmarish issues we experienced last year. His weight is still low, but in October he turned a corner, attitude-wise, prompted - I believe - by a second visit to the hospital when he passed out at school and his pulse dropped again.

That hospital visit was a nightmare, mainly due to Ben’s behaviour when hospital security had to be called to restrain him as he tried to discharge himself, violently.

Following all this, CAMHS “read the riot act” explaining that if he didn’t put on weight, he might need to be hospitalised sooner rather than later. I believe Ben was sufficiently frightened to make the decision to turn a corner.

More about our progress in the battle against anorexia nervosa next time...

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