In 2016 I gave a talk at the Scottish Eating Disorder Interest Group (SEDIG) Carers' Conference in Edinburgh.
(You can download a PDF of my slideshow here...)
Hello. My name is Bev Mattocks and I'm thrilled to have been asked to talk to you about our story. I hope I won't ramble on too long!
I am the parent of a boy who developed anorexia at the age of 15 in 2009. Today I blog, I do talks, I've appeared on TV and radio and have written a couple of books. The aim is to raise awareness of the fact that boys get eating disorders – and help parents to recognise the signs so they can get urgent treatment for their son. Basically, I don't want other families to go what we went through.
It all started in the spring of 2009 when Ben was 15. He'd been quite chubby at primary school and bullied as a result, but as he went on to secondary school he began to get involved in rugby and lots of other sports. As a result he began to get leaner and more muscly, and he began to really love this new physique. Being 'the guy in the rugby team', too, meant that he was popular, which he hadn't really been at primary school because he had been a very quiet sort of boy. So for those first two years at secondary school, things were going pretty well.
But by 2009, he was getting fed up with all the sport. However he was worried that if he cut back on sport he'd put on weight and get fat again and stop being the popular boy he'd become. So he had a bright idea. He decided to swap his normal food for diet options so that he could eat the same amount, do less sports and not put on weight. It seemed like the perfect idea.
However things didn't work out like that... Instead of doing less sports, he actually began to feel driven to do more – and meanwhile he was cutting back on his food. And so the downward spiral began... At mealtimes he began to insist on eating 'more healthily' and at school dinners he began to switch from the hot meal and pudding option to the salad bar – and gradually reducing what he'd eat there, too.
As the eating disorder began to take over, his urge to exercise became even stronger. By the summer of 2009 he was exercising more than ever; rugby had always been his main sport, but now he was doing situps, press ups, gym, running, athletics, swimming... You name it and he was doing it.
His eating habits were also changing. He used to eat loads but now he was cutting out fats and carbohydrates; he was rewriting recipes to make them 'healthier', and his personality was changing too. He was getting depressed and snappy, and he was isolating himself from his friends – Ben who'd always been so popular at secondary school. And of course he was losing weight.
I think it was because we'd been with him all summer that the change wasn't as obvious as it was, say, for people that hadn't seen him for quite a while. For example when my mother-in-law visited at the beginning of September she was shocked at the change in Ben. But we hoped that once he started back at school in September he'd snap out of this thing. But it just got worse.
Gradually it began to dawn on us that this 'health kick' wasn't normal.
At the end of September I took Ben along to see the GP hoping he'd be able to talk some sense into him and get him to eat more. But I don't think the GP recognised what was happening either. For a start skinny boys aren't unusual, and of course boys don't get periods (which, in girls, can stop when they lose a considerable amount of weight). Ben had no height or weight records to compare him with. And crucially his BMI was still hovering around the 'healthy' range, even though we later estimated that by this time he'd probably lost around a quarter of his bodyweight.
Ben was also in denial. He sat there in the GP's surgery saying that he was perfectly okay and it was just his mum overreacting. So the GP just told him to go home, eat more, and come back in a couple of weeks' time.
Throughout October we went to and fro to the GP's and each time we were told the same thing: go home, eat more and come back in a couple of weeks' time.
By now Ben was getting worse. He was exercising like crazy. He seemed to be in some kind of permanent deep, dark depression, and his moods and behaviours were getting more extreme. He was becoming violent, which wasn't at all like Ben. And of course mealtimes were an absolute nightmare; because Ben was refusing to eat just about everything. On top of this he was insisting that he was fat, and he wasn't just a little bit fat, he was disgustingly fat. He also developed a new voice: a kind of sinister, deep, emotionless voice, which made my blood run cold whenever I heard it and which I began to refer to as 'the voice of anorexia'. And Ben was still losing weight.
By this stage we were really worried; we realised we were dealing with something far more serious than just teenage angst.
At the end of October the school nurse called me in. She said the staff were getting worried about Ben. He'd lost a lot of weight. And his behaviour in and out of lessons was getting disturbing.
He'd been cutting back at school dinners; eating stuff from the salad bar instead of the usual cooked meal with pudding. He'd been seen in the school gym, pushing himself on the machines as if he was in some kind of trance. And he was spending more and more time in the medical centre because he'd freaked out over something or other. I was forever being called in to school to take him home because he'd got out of control. By this time I was getting to know the school nurse very well indeed!
Anyway the school nurse asked me how much I knew about eating disorders because to her this looked like a classic case of anorexia even though she'd never seen a boy with an eating disorder before. She told me all about CAMHS, because they were the people that could help Ben to recover. She told me to go back home, call the GP and demand an urgent referral to CAMHS, which I did right away. While I was waiting for the appointment from CAMHS to come through, Ben just got worse.
In the end it took a whole month for the acknowledgement letter to come through from CAMHS. I called the number on the letter hoping to book an appointment only to be told that it could be around 18 to 22 weeks before Ben could be seen, and even then it would just be for an assessment, not the eating disorder treatment itself.
By now I was totally desperate. I knew that what we were dealing with was very serious indeed and I just couldn't understand why we were being told we'd have to wait so long for treatment.
As Ben got worse I went to and fro to the GP's surgery to see if they could speed things up, but I was just told that we'd have to wait our turn. The same happened whenever I called CAMHS. During that December and January things were going downhill fast and I was seriously worried that by the time Ben's assessment came through, he could be dead! No one seemed to care.
I even began to doubt myself. Was I overreacting? Was he really not that bad? But everyday things just got worse and worse. I mean how bad did things have to get before he received treatment?
Then at the end of January I got a phone call, not from CAMHS, but from the school nurse. Ben's heart was 'doing funny things'. So I rushed him into hospital. By this time his pulse was registering 29; I think is supposed to be around 70.
Ben spent the next 24 hours wired up to machines. Strangely no one seemed interested in the fact that Ben had anorexia even though I now know that a low pulse rate (Bradycardia) can be one of the complications of an eating disorder.
Anyway I called CAMHS, told them what had happened and demanded that he was seen as soon as possible. Thankfully they said to bring him in the following Monday. And I thought, 'Thank God for that, CAMHS will fix it, CAMHS will get him to eat'.
The trouble was that once in front of CAMHS I don't think they realised how sick he was, despite the heart problem. You see Ben was behaving like a model patient, pretending that he was perfectly okay. There was none of the screaming, shouting or anorexia voice that we had back at home, none of that. And also Ben didn't look too bad if you had never seen him as a rugby player. His BMI was still relatively “okay”, so CAMHS were pretty relaxed about things, but I wasn't!
CAMHS favoured the 'talking treatment'. The idea was that we had to wait for Ben to want to recover. He wasn't felt to be sufficiently sick to warrant refeeding because, again, his BMI wasn't low enough, so there was no eating plan – I had to ask for one. I got little support in trying to get him to eat; indeed I was told not to come on too strong, and to back off.
I persevered with the eating plan for a couple of months. I had to tweak it massively because he wouldn't eat virtually anything on it, but h e did gain a little bit of weight.
I was excluded from many of the CAMHS sessions; it was mainly individual sessions between Ben and the psychiatrist. I think I was felt to be part of the problem rather than part of the solution; an 'anxious kind of person'. Of course I was anxious! I was desperate for help and support and I was madly searching on the Internet for what I could find on eating disorders.
Then a couple of months into treatment in March 2010 I came across the FEAST website and forum. At last I'd found some support, help and advice from other parents who'd been through the same thing as me. I thought “phew”! And over the next couple of years the FEAST website and forum became a lifesaver.
But I was puzzled because on the FEAST website it was all about FBT (Family Based Treatment) which seemed to bear no resemblance to the '“talking treatment' that Ben was receiving which worried me. I asked CAHMS what treatment model they were using for Ben's eating disorder, but I never did find out.
So there I was, battling to get Ben to eat, with very little support. The tweaked eating plan was eventually scrapped after a couple of months because it was felt to be too stressful for Ben. It was felt that Ben had arrived at a stage where he could take control of his own eating and 'learn how to make the right choices' from what the scales were telling him.
But the scales were telling him that he was 'getting fat'. So I wasn't surprised when he began to lose weight again.
By summer 2010 I was terrified of where things were heading. I really thought that the eating disorder was going to kill my son, or he was going to kill himself. It was a nightmare summer made worse by the fact that CAMHS were on leave for much of the time. I can't overestimate how horrendous that summer was; we reached rock bottom.
Or so I thought, because every time I thought it couldn't get any worse, it did. Ben's moods and behaviours became more extreme. He was threatening to kill himself much of the time and was doing dangerous things, like the day he attempted to climb onto the house roof. And he was losing more weight.
Then in the October he was back in hospital again; he'd fainted at school and his pulse was registering 30 bpm. This time, thank goodness, the hospital took it seriously and so did CAMHS. In fact it was a watershed moment in the CAMHS treatment for his eating disorder. They came down like a ton of bricks on Ben and the importance of getting well. They even said that if he lost any more weight then they wouldn't hesitate to hospitalise him, no matter what his BMI.
There were no more individual sessions and for the first time I felt part of the team; I felt CAMHS were on my side and we were pushing together to get Ben well. There was a change in attitude from Ben too; he was frightened by the heart scare and frightened by the prospect of possibly having to go into hospital. So for the first time he began to want to recover.
But although he might want to recover, the trouble was he was trapped by the eating disorder. He was exercising more than ever; by this stage he was completely addicted to exercise which meant that he continued to lose weight. In fact he couldn't stop himself from exercising. He was completely stuck; despite us all working better together as a team.
In February 2011 Ben reached his lowest weight. By this time nothing was working. Nothing was motivating him and he was getting frustrated. We were terrified he was going to give up.
Then at Easter I was on the FEAST website when I came across something called 'Contracts', something being used at the eating disorders center at the University of California for adolescents with eating disorders. From what I could gather these contracts seemed to be all about encouraging progress and rewarding achievement using a system of rewards and incentives. And I had a light bulb moment: this may just work for Ben, as a kind of crutch to help him move forward. Amazingly when I explained it all to Ben he said yes, let's give it a go. After all we had nothing to lose by this point.
Every few days we'd sit down together and 'do points' as we called it. The only rule was that we both had to stay calm; no one was allowed to yell or shout. Ben got points for progress: for eating more and of course regaining weight. He got points for facing his massive list of fear foods, one by one, and for controlling his exercise. He also got points for getting back into school, because we'd taken him out of school the year earlier.
Importantly our contract was all about encouragement, never punishment and certainly not a bribe. And very gradually things began to improve.
Of course it wasn't a quick fix by any stretch of the imagination; it was very, very slow; often a case of one step forwards two steps backwards. But the general trend was forwards.
Over the next 12 months the focus of most of the CAMHS sessions was how we were getting along with the contract, because CAMHS were happy to go along with it, especially as Ben had bought into it and things were finally improving.
Ben was discharged in 2012 when he reached the age of 18: he'd been with CAMHS for 26 months. During that time his weight had gone up over the first couple of months with the eating plan and then down over the next 12 months as the eating plan was withdrawn. Then over the final 12 months with the help of our contract it went back up again – with the result that, on discharge, Ben was exactly the same weight as when he started!
We were told he'd be followed up for 12 months afterwards, but nothing really happened. It was really just Ben and me plodding forwards.
In September 2012 Ben went to university. Unfortunately he only lasted two or three days. He just couldn't cope. So we spent the next 12 months working hard as a team using our contract to really move things forwards. We achieved an awful lot in those 12 months.
In the spring of 2013 we met with Student Services at the university to help to put together a support package for Ben to try again in the September. We met with the various departments across the university who would be able to help Ben and they were really, really fantastic.
Anyway Ben made a second attempt at university that September and this time he stayed, made easier by coming home at weekends. It wasn't perfect by any stretch of the imagination, but at least he did it.
Ben's second year at university was much more positive. He was making new friends and the eating disorder was disappearing. Most of the work was done by Ben himself. As he kept saying: “The eating disorder stole so many years from my life, I'm not going to let it steal any more!”
This year is Ben's final year at university. He's been sharing a house with his new friends and has been voted onto the committee of a university society he's a member of. He's stopped coming home most weekends and, most importantly of all, he is eating very, very well. He is even planning to stay on to do an MA next year.
Ben feels good about how strong he is, having overcome the eating disorder. And he's just getting on with his life, like any other young man.
So looking back over Ben's eating disorder and treatment, what do I feel could have been better?
Definitely for the professionals, from the GP through CAMHS, to have taken me seriously and taken urgent action. To have to hang around for months watching your child head towards possible death because they can't access treatment for an eating disorder is something that no parent should ever have to go through.
And to focus on weight gain and weight restoration first and foremost, and not to just settle for 'good enough'. I would also have liked to have been given help with getting him to eat. And for me to be included as a vital part of the treatment team. After all I was with Ben all week; CAMHS were only with him for 60 minutes.
It would also have helped for the professionals to recognise that the signs of eating disorders in boys can be different from girls. Boys don't get periods. Boys can often develop an eating disorder via an exercise addiction. And boys can possibly have a higher BMI, just like Ben did. And to realise that young people with eating disorders can pretend that everything is perfectly okay, made even more convincing when their BMI is still relatively 'normal'.
Yes I would have liked to have seen less emphasis on BMI is an indicator of seriousness and of recovery. Ben had been a rugby player, so his BMI was pretty high back then and I think this is the main reason why the alarm bells weren't ringing and why Ben's case wasn't seen as urgent throughout the whole process.
I still have a lot of anger that CAMHS never pushed to a full recovery and full weight restoration and again I think this is because of the BMI issue. Our one failure is that Ben never did reach his pre-eating disorder weight.
But on a positive note, what did help?
Definitely the FEAST community which was an absolute lifesaver: to find other people who'd been through exactly the same as we were going through, and also to read about evidence-based treatment for eating disorders. Without the FEAST community we would never have discovered contracts which Ben says was the number one thing that helped him to recover from the eating disorder.
Ben's school was incredibly helpful too, willing to pull out all the stops to be as flexible as possible in order to help us. The school nurse especially was amazing. She was an absolute saint. The support package from university was great as well.
But the number one thing that helped Ben to recover from the eating disorder was Ben himself: his strength of character, his belief in our contract and his refusal to let the eating disorder destroy his life.
And probably me and my husband Paul, especially as we became more knowledgeable about eating disorders (mainly thanks to the FEAST community) and more confident to stand up for what we felt was right. I always say: 'Never underestimate your instinct as a parent.'
At the beginning of 2011, a year before Ben was discharged from CAMHS, I began to write a blog. The aim was to raise awareness that boys get eating disorders and to help parents to recognise the signs and get urgent help. I also wanted to show that recovery is possible and what worked for us. Of course what worked for us may not work for other people, but it just might. So if my blog's helped just one family, then it's been worthwhile.
Anyway I hope my talk may inspire others and show's boys can recover from eating disorders. Be happy to answer any questions you have. Thank you.
"Please contact me if you'd like me to do a talk about eating disorders in boys. I do talks for parents of young people with eating disorders and at schools to help teachers and staff identify the signs of eating disorders in boys." Bev Mattocks