Thursday 28 March 2013

The letter I would never send to Ben's friends

Here's the letter I'd love Ben's friends to see, but I would never send because he would go mad! But it feels particularly appropriate right now...

Dear Ben's Friends

Remember the days, back in years 7 to 10, when Ben was at the heart of your social circle? When he'd be fun to be with, go to all your parties and bonfire night celebrations, hang around town, see movies and get involved with things at school? Remember when he was in Bugsy Malone with you all? He was awesome, wasn't he?

Then one day Ben fell sick with an illness that's so incredibly complex it's almost impossible to explain unless you've been through it. Anorexia, which is what Ben began to develop during the spring and summer of 2009, just before you all went into year 11, isn't just about cutting down on food and losing lots of weight. As the brain becomes seriously malnourished it begins to behave differently. This is why you saw a dramatic change in the way Ben behaved at school in year 11, why he gradually began to isolate himself from you all and why he eventually left school altogether until year 12. And why he never really returned to school full-time after that.

Please never feel that anything any of you did or said was responsible for the illness. Another complexity of anorexia is that it's hard-wired into someone's brain. Basically when they lose a lot of weight in a short space of time, it kicks in. If they never lost the weight, then it might never kick in. I like to think of it as a bit like an alcoholic would never know that they were predisposed to alcoholism if they never had a drink.

It is no-one's fault. Why did Ben lose such a lot of weight, you might ask? Well, one of the reasons was the pressure he felt to look good, to have a six-pack, to look like the fitness fanatics in those magazines but without having to do all the 24/7 exercising that goes with it. Cutting down on food seemed the easiest answer and the rest, as they say, is history...

I know that many of you have done your best to try to understand Ben's illness, especially when his medical team came into school to talk to a group of you. At that point we really thought that things would change and that Ben would begin to ease himself back into the social circle he so longed to be part of.

But, 18 months after that meeting, it hasn't really happened.

Yes, on occasions, we thought - wow, this is it, he's back in there, back to normal and things are going to be just as they used to be. Like the end of A levels parties you had. And the History trip to Poland.

Ben is almost recovered from anorexia now. But one of the things that, with him, is so very difficult to shake off is the fear, anxiety and panic that comes with social situations. Knowing Ben as you did before his illness you might find this hard to believe. You might even think he's avoiding you, that he's found a new circle of friends. You might think he's not interested in you any more.

But, I know for a fact, that he longs to be back where he was before the illness took hold. He longs to be back with you, messing around, going to town, going to see movies... everything you all used to do. But, because of what remains of his illness, it is as difficult for him as it is for some people to enter a room full of spiders.

Meanwhile, he is incredibly alone. He is lonely. He spends every evening sitting on our sofa. He has no friends. And it's not the way it should be for a 19 year old, especially Ben who - as you well know before his illness - was confident, friendly and fun to be with.

So if Ben fails to turn up to social events, like the school reunion in November and various other events, it's not because he isn't interested; it's because he just finds it so damn hard to do. His illness makes him get incredibly anxious in the build up to the smallest event. So much so that it's easier for him just to say, no, I'm not going.

I want you to invite Ben to all your social events, even create whole new social events so he can be included. I want you to invite him round to your houses, like you used to do, to chat or play games. I want you to get him to invite you around here to do the same. I want you to chat to him on Facebook more than ever so he feels really included in everything. I want you to invite him to spend weekends with you at university.

I just want you to practically drag Ben kicking and screaming back into your social group as you all stand there with welcoming arms.

And I want you to really get to understand his illness and help him to work through this last remaining obstacle. Because, at 19, Ben should be with his friends, not here with us on the sofa every evening.

This is your loyal friend Ben, we're talking about. The boy who was so much part of your lives for so many years and who misses your friendship like hell.You may think that you've all made huge efforts to include him over the past three years. But, unfortunately with the way the illness has affected Ben, it takes much more than that. You have to virtually drag him out of the house physically. And, please, never, never act as if you feel sorry for him.

Ben just wants to be treated like a normal guy.

More than anything else, he just longs to be the Ben he was before the illness struck.

It would mean so much to me if you could help this to happen?

Love from Ben's mum


  1. Oh Batty - I'm reading this in the staff room and ahve tears streaming down my face. SO much love for your boy and so much anguish and loss. This WILL fuly turn around Batty - it really WILL. He is the same boy he was and he is nearly nearly back with you - perhaps someone will read your letter and make the first steps. I really wish I could do something for Ben from here ..... love and many many hugs indeed xxxxxxxxxxxx

  2. This is so sad to read. I'm in the exact same position as Ben and have been stuck here for too long. I know just how frustrating it is to want so much for things to be how they used to be but find it so hard to say yes to invitations and be in social situations without that crippling anxiety.
    Friends will eventually stop trying to include him if he keeps backing out so it is so important to keep trying and it will become more comfortable for both him and his friends.

  3. I can feel the agony in every word-what you wish for your son and the sadness that it isn't possible right now must be heart breaking. It will get better, he has such a loving and understanding mum

  4. Batty were you ever able to get Ben to a 22 BMI for 6 months or longer? This is my current experiment. I will report back.