Talk Transcript Nov '13 / Our Story
Back at primary school, Ben had been quite overweight and he'd been badly bullied as a result. So, in a bid to build up his confidence, his Dad took him along to one of those Sunday morning rugby clubs. Ben trotted along every Sunday and he was actually very good at it. He was picked as Number 3 in the team, a position given to the biggest, toughest boys. Gradually Ben's puppy fat was replaced with muscle, but he was still a big lad - a typical rugby player, really.
At the age of 11, Ben won a scholarship to a fantastic independent secondary school with a reputation for sport, especially rugby. He was immediately picked for the rugby team and quickly became a star. Indeed, for the first three-and-a-half years of secondary school, everything appeared to be going from strength to strength. Ben was popular; he was "the guy in the rugby team" which carried a lot of clout amongst his peers. He established a lovely group of friends and, as we watched other teenagers go off the rails, Ben just seemed to blossom. We really thought we'd got off lightly. We thought: "Wow! We can't believe it; our son's going from strength to strength. We've avoided all the teenage angst business!"
How little did we know… because three-and-a-half years into secondary school we arrived at that point at the beginning of 2009 when things began to subtly change inside Ben's head. The problem was that, although we didn't know it at the time, Ben was getting bored with sport. He was playing an awful lot of sport, not just rugby; he was doing swimming, badminton, cross country... he was doing virtually every sport under the sun and, frankly, he'd had enough.
The other problem was that he loved his food and doing all this sport meant that he could eat an awful lot without piling on the pounds. You see, Ben was terrified of "getting fat" again, like he'd been at primary school. He associated that period with being bullied, unhappy and unpopular.
It was then that he had a Eureka moment. He began to think: "If I substitute all the high calorie, high fat foods I'm eating for low calorie, low or no fat versions, then I'll be consuming the same quantity but with less calories, meaning that I won't get fat - so I can cut down on the sport!" It seemed like the magic bullet.
So this is what was going on inside his head, probably for the first six months of 2009. Meanwhile there were other subtle changes taking place. Unbeknown to us he was cutting back on school dinners, going for the salad option rather than the cooked meal; fruit for dessert rather than sponge puddings and custard. He was cutting out breakfast, too. But his Dad and I had no idea that this was going on. I mean, why would we? Why on earth would we be looking out for something sinister in the eating habits of our healthy, happy, rugby-playing son who had eaten everything that was put in front of him since the day he was born?
It wasn't until we went on holiday to France in the July of 2009 and were with Ben 24/7 that the changes became more apparent. Ben was doing an awful lot of exercise. He was swimming up and down the pool every day, he was going for runs, he was doing lots of sit-ups and press-up. He was refusing to eat the kind of stuff he'd normally eat on holiday like ice creams, biscuits, cakes, bread and butter, and meanwhile he was still reading those men's health magazines which he'd brought along with him.
But we just saw it as Ben wanting to get into top-to-toe condition, ready for the rugby season in September. He was just about to go into year 11, GCSE year, when everything cranks up a gear in rugby; the game gets much more physical.
But as time went on, we began to be aware of other things - behaviours that began to set off the alarm bells. For instance, we subscribe to the BBC Good Food magazine and the minute it arrived Ben would snap it up and re-write all the recipes. He'd cross out things and announce that "No, you don't need oil!" or whatever. He'd put great big crosses through recipes that were total no-no's - cakes, pies, fried things and so on. Meanwhile he was meticulously analysing the nutritional content, in recipes and on food packaging. He was going for low fat or no fat foods only. It was just this obsession with healthy eating. It was all, "Mum, you should be eating healthily, Mum you don't need biscuits, Mum we're all going to have a healthy Christmas dinner this year, we're going to have fat-free sushi and things like that instead of the normal meat and two veg".
He was cooking an awful lot, too, devising all manner of low or no fat recipes, some of them pretty unpalatable and dry. He began to get ritualistic in the way he would prepare his desserts. Ben had always prepared his own desserts, mainly because he would eat so much more than his Dad and me. But, by the end of the school summer holidays in 2009, he was doing odd things like chopping fruit into tiny pieces and carefully arranging them on a plate. It would take ages - to arrange and to eat. In fact he was eating an awful lot of fruit; fresh and dried. Fruit and salad, really, and vegetables. Oh, and he was cutting himself off from his friends. I don't think he'd seen any of his friends all summer long which was really unlike Ben who'd been so popular since he started secondary school.
Meanwhile his mood was dropping. He was getting snappy, depressed and most noticeable of all he was losing weight. By the end of the summer he must have lost around a quarter of his bodyweight, which brings me to Problem Number 1 when you have a boy.
For a start my husband and I didn't know that boys got eating disorders and so we weren't looking out for one. Ben didn't know that boys got eating disorders, either, so he didn't recognise an emerging eating disorder in himself. He knew that something was going on inside his head but he didn't know what it was.
So there we were, encouraging all this healthy eating and sport and yet, by the time September came along, we knew that something was wrong but we didn't know what, especially as Ben was losing weight - and didn't seem to be able to eat more to compensate.
I'd say, "Look, Ben, if you're doing all this exercise then you need to be eating a heck of a lot of food. You need all these proteins, and all these fats, and you need a balanced diet". But he'd always come back with some "science" that he'd invented as to why no, no, no he had to have low fat stuff or no fat stuff, why fats were bad and did all these horrible things to your body. He'd insist he had a low metabolism and so he didn't need to eat all this stuff.
Also, crucially, his BMI was still "just" within the healthy range. Remember, Ben had been huge. He'd been a big, muscular prop forward; we used to joke that he was made from concrete. And now he was a skinny waif, a shadow of his former self, and yet his BMI was still "just" within the healthy range.
Also, Ben was in denial.
He'd ask to be excused from lessons to visit the bathroom, only to run around the grounds because his exercise cravings had got too intense.
He was experiencing vicious mood swings: really deep, dark depression and violent behaviour, especially at mealtimes which were a nightmare. He even developed a different voice: the voice of the eating disorder which was low and slow, expressionless and monotone, almost evil. It sounds crazy but it was as if he was possessed. We even began to refer to it as the "demon".
Meanwhile Ben was continuing to isolate himself socially; by this time he'd totally cut himself off from his friends - Ben, who'd been the most popular boy in his group.
He was also insisting over and over again that he was fat - and he wasn't just fat, he was getting so "disgustingly, horribly fat". He would sit on the sofa and pinch the "rolls of fat" on his stomach. He'd be in floods of tears about how "obscenely fat" he was, even verging on the "obese", yet all we saw was skinny Ben who was disappearing before our eyes.
We'd say things like: "Look, that's just skin, not fat!" But he couldn't see it. He was becoming totally irrational in his thinking - and he was losing more weight.
On one occasion the school nurse called me in because Ben had done something or other. We had a chat, and she told me all about anorexia. She also told me about CAMHS and insisted that I go home, call the GP and get an urgent referral for Ben. So I did. This would be around the end of October and led to Problem Number 3...
Unfortunately they didn't; they didn't do anything, really. By now, Ben was too entrenched. By January he was a shadow of his former self. He was an emotional wreck. His life revolved 100% around food and exercise - input, output, input, output...
He was also finding it increasingly impossible to be in school. Every day I found I was having to pick him up early because something had happened; he had got into some scrape. In the end we removed him from school altogether. Thankfully the school was incredibly supportive. The staff were absolutely fantastic.
So I charged into school, grabbed Ben and rushed him to the local hospital where he was hooked up to machines and they took blood. Then they put him into an ambulance and took him down to the specialist cardiac unit at the other big hospital in our city where he was wired up again.
This led us to Problem Number 4… And, looking back, it's something I'm still puzzled about. It's that the cardiac staff didn't seem to make the connection between a slow heart and an eating disorder. The consultant said: "Well, I understand Ben is very athletic and we find that athletes' hearts tend to slow right down because they get so fine-tuned. So in the absence of any other reason, I assume it's because Ben's sporty." And so, because the various tests were coming back clear and his pulse had stabilised, Ben was discharged.
I was terrified. After all, you can't see what's going on inside your child's chest and, unless you take their pulse every minute of the day, how would you know if it dropped again? I didn't feel reassured by what the consultant had said, either, because - yes - Ben was very sporty but only because, by this time, exercise was a means of purging. He was exercising to extremes, much more than his increasingly emaciated body could cope with. He hadn't an ounce of fat and he'd lost all his muscle, and of course the heart is a muscle. So, to me, it figured that this was what had caused the heart scare.
The first thing I did when we got home was to call CAMHS. I explained what had happened and insisted that Ben was seen right away. Thankfully a psychiatrist came on the line and said, "Yes, yes, I understand, I'll see Ben on Monday. Bring him in at 8 o'clock".
...Which led to Problem Number 5...
When I took Ben into CAMHS on the Monday morning and they were actually seeing him face to face, I don't think they thought it was as serious as it was. You see, by now his BMI was only "just outside" the healthy range. Worst of all Ben was behaving impeccably. He was playing the model patient. So what they were seeing was someone who looked okay, whose BMI was relatively okay and who was behaving okay.
After a couple of weeks they even talked about spacing out the appointments to fortnightly. And I was thinking "No!!" because, you see, Ben was immaculately behaved at the CAMHS sessions. But the instant we left the building - whoosh! - it was like Jekyll and Hyde. He would transform into a monster and would punish me all the way home. Once inside the house he'd revert to this evil, vicious, demon-possessed thing. This transformation took place every time we went to CAMHS. But, of course, CAMHS didn't see any of this.
This led to Problem Number 6 which was that, because - I think - Ben didn't look too bad and his BMI was still relatively okay, the focus wasn't on re-feeding. The emphasis was on the talking treatment, of talking to Ben until he wanted to recover. I wanted an eating plan, because I knew he'd lost a quarter of his bodyweight and he was not the boy he had been; he was a shadow of his former self. I wanted to feed him up and put all the lost weight back on. I just wanted the old Ben back.
Around The Dinner Table forum and F.E.A.S.T. This really was the lifeboat in the stormy sea. The support I received from fellow parents coping with children with eating disorders was amazing, as were the links to resources and information. The more I talked on the forum and the more resources I read through, the more my instincts were proved correct - primarily that I needed to get the weight back onto Ben and get his brain healed and nourished through a healthy, balanced diet. This was the way that I was going to get him well.
Anyway, by hook or by crook, I did manage to get Ben to eat more food: three meals and three snacks a day. We had two or three months of absolute hell, but I managed to get some weight onto him. But then, around May or June, he "downed tools" and refused to continue with the eating plan.
And so, towards the end of spring and the beginning of summer, Ben gradually took back control of all his meals except the evening meal which I would prepare. The three snacks went out of the window immediately and he cut back on everything else. As a result, over the summer of 2010, Ben lost weight.
As his weight went down, his mood went down too. He began to get really depressed and his behaviours became extreme and increasingly violent. If I thought they'd been extreme before, they were nothing like they became over this period, the summer I now refer to as "the summer from hell".
That summer it was just Ben and me, because Ben's Dad was working away from home. It was me, alone in the house, with Ben and the demon. I was terrified because he was getting physically violent. I'm only small and he's tall. Even though he was very thin by this time, he was still very strong. On one occasion I rang CAMHS because I was petrified of what he might do and I was unable to control him. Our regular psychiatrist wasn't there but I spoke to the duty psychiatrist who promptly informed me that "We're not a 24-hour emergency service, you know!" I just felt so very, very frightened and alone.
Meanwhile Ben was kicking things, he was shouting and swearing, and he had to be restrained by the male nurses. It was horrible, horrible, horrible. I could see everyone looking at me thinking, "Can't you control your son?" And there I was longing to shout, "This isn't what Ben is like; he's normally really, really well-behaved, he's just not this person at all".
Unfortunately the understanding doctor's shift ended and another doctor was brought in who took one look at the violent, swearing Ben and fled! The nurses took Ben's pulse which was now relatively normal again as a result of all the violent activity. Ben was discharged.
Thankfully this incident led to CAMHS taking the situation very seriously. They told Ben that if he deteriorated any further, or his heart continued to be problematic, then they wouldn't hesitate to hospitalise him, and meanwhile he'd need to visit the GP for regular ECGs and blood checks. The word "sectioned" was used.
The problem was that, when push came to shove, he was unable to do anything about it. He was so trapped by the vice-like grip of the eating disorder that he simply didn't have the strength to fight it.
And then, round about Easter, I was on the ATDT forum when I came across a thread about something called "contracts".
We decided to implement a system of points which would add up to cash. I certainly don't advocate cash rewards for everyone but it worked for Ben because he wanted a new games console. We developed a kind of currency whereby three points equalled £1.
So that, loosely in a nutshell, is what our contract looked like.
Now it's important to point out that this wasn't a bribe or punishment; the contract was just a gentle encouragement as we worked together as a team. We'd get together at our contract meetings, as we called them. We'd agree that neither of us was permitted to yell at the other. It was simply a time to chat rationally, without the eating disorder "demon" being present.
We also began to go on lots of leisurely walks together. We'd talk about stuff, about how the contract was going and so on. Very, very, very gradually we began to see progress - very subtle changes, extremely slow, often painfully slow. But they were positive changes. Everything was improving. The only problem was...
...And it was Problem Number 7. I wanted a bigger push on the weight gain front. I was desperate to get Ben back to his pre-anorexia weight. But it was all about being happy to settle for "good enough". I was told that some individuals "choose to remain at a low weight" because it's "easier for them to cope with". Now, for me, "good enough" isn't good enough. Fully recovered means fully weight restored.
But, thankfully, now that Ben was eating a far more balanced diet as a result of overcoming fear foods, especially fats, his thinking became more rational and his mood began to improve. So, very gradually over the summer, autumn and winter of 2011, things moved slowly forwards. Then, in March 2012, Ben - now 18 - was discharged from CAMHS. I checked his records and noted that he was the same weight on discharge as he'd been at the start of treatment. Remember he'd put on a bit of weight at first and then gradually lost weight until we introduced the contract. Then it had begun to gradually creep up again. As a result, when Ben was discharged after around 26 months of treatment, he was the same weight as he was at the start, and this concerned me.
There were a number of other outstanding issues, too. Sure, we'd moved mountains, but there were more mountains to move. However, because Ben had been discharged, we were left to our own devices. The months that followed were very tough, including one failed attempt at university, but we managed to plough on together: Ben and me, working together as a close-knit team.
Back in 2011 I began a blog to help other families of boys with eating disorders, because I didn't want them to go through what we had gone through. I wanted to help them to identify the signs of eating disorders in boys and to take urgent action, to know how to approach their GP and demand a speedy referral followed by good, evidence-based treatment - and to demand full weight restoration.
This led me to the publication, in March 2013, of my book Please eat... A Mother's Struggle To Free Her Teenage Son From Anorexia which describes our story in depth, closely followed by When Anorexia Came To Visit in which I talk to 20 other families about their experiences of an eating disorder.
So to summarise...
First, my Biggest Regret (apart from Ben getting the eating disorder in the first place)… It is that Ben was never pushed to get back to his pre-anorexia weight. He left treatment at the same weight as when he began.
Why do I think this is?
One of the many reasons may have been because CAMHS hadn't known Ben at his pre-anorexia weight. His start / finish weight was still "just" within the healthy range on the charts. Also, we were all scared of "the anorexia bully" if we pushed Ben "too far"; we were worried that he might disengage with treatment - or worse.
The good news was that Ben got on well with his psychiatrist and took on board much of what she said. I truly believe that if she'd pushed for full weight gain, he would have listened to her. But these final kilos and the other outstanding issues were left to me to sort out, and it was tough. I really don't believe that you can cut a child off from CAMHS treatment, simply because they've reached the "magic" age of 18. Although we could just about see the finishing line at this point, we weren't there yet. Ben needed further treatment, but he didn't get it. Also, now he was 18, the law permitted him to make his own decisions as to whether or not he continued with therapy. But we got there in the end. It was slower than it should have been, and tougher. But we got there, the two of us, because basically we're strong people who refuse to give in to the "ED".
What was our Biggest Success? The contract, of course! And it was all thanks to information that I found on the ATDT forum.
Certainly, this kind of contract wouldn't work for everyone, but it came at just the right time for us - when Ben was stuck and unable to move on. It helped him to escape from Limboland, gradually gain weight, face and overcome fear foods, conquer other challenges and control his exercising (from Day 1 of the contract he managed to keep his exercise within strict limits). It helped him to ease himself back into school. And it helped Ben and me to work together as a close-knit team to kick the anorexia out of his life. Ben says the contract is the Number 1 thing that helped him to recover.
In June 2013, Ben won a holiday in Cornwall in a competition, so he and I drove down there. Ben suggested we have a clotted cream tea in a café attached to a picturesque watermill. As I watched him consume the scones, clotted cream and jam, and add full-cream milk to his cup of tea, I took the photograph I thought I'd never take.
In fact I took several, mainly because I couldn't believe this was happening - Ben munching his way through a Cornish cream tea, at his suggestion, without a hint of anxiety or hesitation. This was the boy who - on one occasion - collapsed in a heap of noisy tears because he couldn't face the idea of semi-skimmed milk, or even "orange top", a half-way-house between skimmed and semi-skimmed. And here he was, in these photographs, with the arch dairy "baddie" of them all… clotted cream!
Well of course I was delirious with delight. Yet on the surface, I pretended it was just a normal occurrence. (But later I told him how incredibly proud I was of him!)
Today, in late 2013, Ben continues to eat and cook amazing things - healthy, balanced meals that help him continue to put on weight. These days he does virtually no exercising. He is still thinner than he used to be and we are still working on those last few kilos - both of us. But, on the whole, it's working. Ben says that he never, ever wants to go back to the hell that was the eating disorder, the devastating leech-like parasite that destroyed so much of his teenage life.
And, believe me, neither do I!