Monday 19 September 2011

"Is it something we've done? Is it something I'VE done?"

This is what Ben's dad said over and over again - and still does on 'bad' days. It's also what I used to say sometimes. "Did I overfeed him as a baby or as a child? Was it my fault he developed an insatiable appetite and got a little bit plump towards the end of his primary school years?" The general consensus of expert opinion is that parents DO NOT 'cause' their child's eating disorder; an eating disorder is far too complex to have such a 'straightforward' single cause. (See what the experts say on this video.)


These days, experts reiterate again and again that PARENTS ARE NOT TO BLAME for the anorexia, bulimia or other eating disorder. Instead an eating disorder is thought to develop as a result of a variety of issues - what I interpret as a 'toxic mix' of genetic make-up and general disposition exacerbated by a mix of external environmental factors.

In our particular case I believe the 'toxic mix' comprises a bit of my Dad's tendencies towards OCD, perfectionism and self-imposed isolation - and my husband's family's predisposition towards addiction and some mental health issues. On top of this is the fact that Ben got quite plump as a child and was bullied at primary school. Mind you, I believe he would have been bullied whatever size he was; unfortunately he was that kind of child.

As a baby and toddler, Ben was LOUD and inconsolable most of the time. He found it virtually impossible to 'play nicely' with other babies and toddlers at Mother and Toddler Groups and so on. Instead he'd either sit there with a face like thunder which instantly told any intrepid little 2 year old about to make friends with him to 'back off or else'. Or he'd scream blue murder, so much so that we'd have to make a quick exit. I was the mum the other mums looked at in horror; the mum with the 'uncontrollable child'.

Yet by primary school, Ben had gone to the other extreme. He was incredibly quiet, shy and serious, the kind of boy who'd make one good friend (a similarly quiet, shy boy) and keep a million miles away from the boistrous boys who'd play football and generally mess around. Also, for a reason we could never fathom out, Ben's confidence was at an all-time low. All of this made him an obvious target for bullying and by the final year at primary school Ben was already seeing a therapist about confidence and his fear of school.

Meanwhile I attempted to do something about the (psychological) bullying. Unfortunately the Arch Bully was also the Head Boy, chosen by staff for possessing all the qualities required by a trustworthy Head Boy. As a result staff found it impossible to believe that their Golden Boy and his 'side kick' were making my son's life a total misery - so much so that he needed professional therapy.

We nearly took Ben out of school and had found a place at another school if he wanted it, but it was so close to moving up to high school that Ben insisted he wanted to stay. Thankfully the bully went to another high school, so he left Ben's life for good.

Ben had a couple of issues with some unpleasant boys at high school, but these were quickly quashed by a zero tolerance approach to bullying and the support of a high school with a tremendous ethic. As I've said before, Ben thrived during those first years at high school before the eating disorder hi-jacked his life.

But deep down Ben was still essentially quiet, shy and serious. He still lacked confidence and had a low opinion of himself - inside and out. And he'd never quite been able to shake off an underlying depressive nature.

He always says that, having been overweight as a child, he dreaded becoming the 'fat boy' again. So he did everything in his power to ensure that would never happen. Even though, to people on the outside, Ben was incredibly popular within his peer group, Ben himself wasn't too certain. Something inside him began to nag that a sure fire way to gain the true popularity he craved, especially with the girls, was to 'get a six pack' and develop the kind of perfect physique he saw in 'Mens Health' magazines.

When he looked like this everything would be perfect. He'd be uber-confident and everyone, especially the girls, would love him.

And the rest, as they say, is history.

The point?

I believe a number of factors triggered Ben's eating disorder. His genetic makeup, his general disposition and a mix of environmental factors from childhood puppyfat to bullying.

There is nothing that we, as parents, could have done to avoid the eating disorder developing. I believe it would have happened no matter what. Or it would have manifested itself in some other way - like addiction, clinical depression or OCD.

So, as I keep having to tell Ben's Dad, "No, you are NOT to blame. It isn't anything you or I did - or didn't do. It just happened..."

14 comments:

  1. I came across your blog a couple of days ago and read through it. What upsets me somewhat is that you state your own opinion and point of view as well as the statements of some "experts" as you cite frequently, as ultimate wisdom - EDs are ways more complex and no, you are not an expert (as you call yourself) only based on the fact that your son had/has anorexia. You frequently repeat your same assumptions over and over again, and sometimes I almost get the impression that your son's ED was mainly your problem and not his. Yes, I get it, it's hard for a parent to watch that your child is starving himself eventually to death, but did you ever ultimately ask yourself what it was like for him? You keep repeating that your not the one to blame (and it is not my intention to blame you neither!) but ED is not a person who took possession of your son as some sort of devil, it is a mental illness, that your son was suffering through!(By the way: there;s no clear proof that there is in fact a genetic predispoition...). As one of the "experts" I know said (and yes that's not Maudsley approach, there are others out there too!): It's your childs eating disorder, not yours!

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  2. Anon, you may find this link interesting: http://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/09/families-and-mental-illness-what-do-they-know/

    I am well aware that this illness is incredibly complex and that experts still know relatively little about it. But the method we have been following is working, not just for our family but for the scores of other families we have come to know as a result of the eating disorder. The alternative? To stand back and watch our children spiral downhill and perhaps even die. That wasn't and isn't an option for us. Our son's life was potentially at stake here and if we'd embarked on a method that obviously wasn't working then we'd have discarded it and looked elsewhere. But it has been working, so we haven't. I rest my case.

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  3. Anon,
    It would appear that you've only read this one post of Batty's. Having been a long time follower of hers, and a mother of a son with ED:NOS, I have found that the majority of her blog is about her son, how he is dealing, how it has affected him. Your assumptions about her views on ED seem rather short sided.

    I realize your intent was not to criticize or attack Batty, but honestly, that's exactly how you've come across. I don't know your story (if you're an ED sufferer, a parent of an ED sufferer etc)so I don't understand the point of view you're trying to come from. But having a child with ED, especially a boy because they are so misunderstood and vastly underrepresented, is a painful and horrifying thing for a parent to endure and watch their child endure.

    I would suggest to you that in the future, if you'd like to express your opinion about situations as challenging and heart wrenching as this that: 1. use your name, you've lost credibility with your anonymity and 2. use copious amounts of grace and gentleness in your wording. I've had the privilege of know knowing Batty personally, and she has reached out to me and my son with open arms of support and comfort. I don't know what I would have done without her. And I can say with no hesitation that she is fully dedicated to her son and his recovery. She uses the methods and means that best work for him and then she generously shares her travels with the rest of us to learn from. I thank God I found her and her blog.
    Vale's Mom

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  4. Anonymous

    I find your assertions somewhat distressing and unfouded. Firstly, regarding the role of genetics in eating disorders, I could cite many papers but this is the most recent.

    http://www.ncbi.nlm.nih.gov/pubmed/21243475

    I would be interested to know what you define as an expert in the field of eating disorders. I happen to know that Batty Matty has read and researched widely the subject of eating disorders. Just because she is not a Professor or a member of the IoP or RCP does not mean that she does not know a lot about the science behind eating disorders. For all you know, she may know more about the general field of eating disorders than many "experts" who tend to focus on specific areas of this field. We are talking about not ony psychiatry but neuroscience as well.

    Anorexia Nervosa is a biologically based brain disorder (Thomas Insell, Director, NIMH). I think Batty describes its etiology in a comprehensive manner.

    However, since you are obviously such an expert in all this, perhaps you would like to share your wisdom in a slightly more constructive manner, rather than grinding your particular axe against a loving, caring mother who has nursed her son back to health, against the odds.

    Charlotte Bevan, C&M ED Productions

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  5. @Anonymous (above): You write "did you ever ultimately ask yourself what it was like for him?"

    I know the woman who writes this blog and I also know that she has a good relationship with her son, that he is recovering from his anorexia nervosa (thanks to her hard work), and that mother and son do talk together about how it feels to have an ED.

    The son developed an ED when he was still classed legally as a child in the UK - in which case parents have a legal right to be involved in their child's treatment. So actually, the ED has been the parents' problem as well as the son's problem.

    Btw, I will also point out that 'you are' is abbreviated to 'you're' and not your.

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  6. As Cathy has said, parents have a legal right to be involved in their child's treatment if that child is under 18. In fact, since family based interventions have the best evidence behind them, I would go as far as to say that they have a moral obligation to be involved in their child's treatment unless there are very unusual contraindications. Batty is an excellent example of a parent getting involved, listening to her son not his illness and yes, all the time trying to see what it is like for him. She doesn't write about what it is like for him because she isn't him and it would be presumptuous to do so.

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  7. Hi,
    I don't wanna get involved to much in the discussion above, but maybe for everybody ("Anonymous" included as well as everybody else) an interesting discussion:http://phsa.mediasite.com/mediasite/Viewer/?peid=b8f09d58a62c4e6a987e8da0bd7c5d171d
    Not pro or contra any of the comments above, just another, additional point of view that I found very helpful for myself...
    Noemi (quiet reader occasionally of your blog...)

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  8. (Btw, I will also point out that 'you are' is abbreviated to 'you're' and not your. )
    AND there should be an apostrophe in child's.

    I don't think that at any point Batty has said that this illness is all about her!
    As parents of children with eating disorders of course we are aware that our children are suffering and I personally have spent sleepless nights over the last 3 years despairing about how horrible it must be for my daughter. I can safely say that Batty has done the same thing over her son.
    This is a BLOG... about one family and their son sharing experiences and thoughts, Anon, please respect that.

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  9. @Cathy..."he is recovering from his anorexia nervosa (thanks to her hard work)"???

    I am a recovering boy anorexic, and I can tell you that the hard work comes from nobody but yourself!!
    Talking about ED with your son is great, it helps clear the air.. but personally, if I got this much attention from suffering anorexia, I would easily relapse!! Who doesn't love attention!!

    It doesn't make us bad people for being ill, so we don't deserve punishment, and we most definitely deserve praise for getting well.. but your son is not anorexia nervosa, his purpose in life is not to be a anorexic, he is a human being... let him live, don't make anorexia his identity!

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  10. I don't disagree that the hard work comes from yourself. However, as dozens of other parents of recovered anorexics will tell you, there is solid evidence for the teenager having 'the right kind of' support from his or her parents. It's called Family Based Treatment (FBT).

    Far from allowing the individual to wallow in their illness, this approach comprises gentle guidance and encouragement. Janet Treasure, one of the UK's leading experts in eating disorders, likens it to being a 'dolphin'. She says: "Dolphin may at time swim ahead, leading the way and guiding the passage, at other times swim alongside coaching and giving encouragement, and at times when [the sufferer] is making positive progress quietly swim behind." She also says (which you may find interesting): "A carer needs to appreciate that you have to want to change - only you can make the decision that you want life, health and a future. Remember, 'you alone can do it'. No amount of bullying, coercion, deception or force can sway you if you are determined to stick with the illness. However... a carer learns that they have a role in the process of change; giving you time, opportunity and encouragement to express the pros and the cons of changing. You need this. Remember that, 'you can't do it alone'..."

    James Lock & Daniel Le Grange, two of the world's leading and most respected ED experts say: We believe, in fact, that [parents / carers] are key to your teenager's return to health... Parents' participation in treatment can make an enormous positive contribution to the recovery of an adolescent with anorexia or bulimia... you not only can but should be involved."

    Most important of all to what you say above. My son has given full permission for me to write about him in my blog. Indeed it was he who suggested I write it in the first place and is now encouraging me to write a book.

    I know he has valued my support and the parents of other recovered anorexics I know regularly say their recovered children ask them, not why they paid too much attention to them and interfered but why they didn't do MORE!" Why do they say this? Because EDs are so blooming hard to fight against. When you've got someone on your side, gently guiding you, in a 'dolphinesque' way, it can make it a little less hard.

    Through this blog, my son is extremely keen to do whatever he can to help others who may be spiraling into an eating disorder, and their parents / carers, to show that recovery is possible. But also that recovery isn't an easy process, and Ben is not at the 'finishing line' yet.

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  11. @Anonymous

    First, I am sorry that you developed anorexia nervosa, but I am pleased that you are in recovery.

    Second, I had anorexia nervosa myself, for many years and am fortunately now much better. I therefore agree that recovery takes a LOT of hard work on the part of the sufferer. I have a PhD and I can tell you that recovering from anorexia is MUCH harder than researching for, and writing a 70,000 word thesis.

    Third, I question whether anorexia has anything to do with attention? I am not sure what you mean by your statement "personally, if I got this much attention from suffering anorexia, I would easily relapse!! Who doesn't love attention!!"

    Finally, by stating that Ben's mother has put in a lot of hard work to help her son get well, what I mean is that had she just left him 'to get on with it' he might be dead by now. Batty stepped in and started FBT (which she describes above) and this has helped to save Ben's life - in addition to his own hard work.

    I wish you well in your recovery

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  12. Hi,a few comments: (and yes I am a "recovered" anorexic myself):
    @ anonymous 2: I totally agree with your comment.
    Noemi: I love your link, I'm a huge fan of Dena's film "No numbers - Identity beyond measure". which by the way I would recommend you all to watch. The difficulties I have with the approach Batty describes, is that it is so focused on numbers: calories counting, weighing, BMI... seriously, this is nothing but reverse anorexia, not a life free of that dictatorship, no "identity beyond measure".And talking to other "recovered" people, you often hear (which is my opinion as well): Anorexia is not about food! That's just the symptomatic. Of course, people need to be renourished, don't get me wrong I agree with that. But the problem lies somewhere else. And measuring recovery solely on weight restoration is highly misleading. Seriously, I recommend to watch that movie!!!

    And @cjporter and cathy: I agree the style of the comment of anonymous 1 is not great, but this is an open forum and somebody posting his opinion in the internet has to be open to criticism (and I got the impression Batty is open for discussions...). Is it really necessary to point out typing errors as a proof that you're so superior or whatever? Maybe this person is not a native english speaker, so what's the point???? (I myself am from France originally by the way, so I'm sure you'll find some mistakes in this post as well...)
    Julie

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  13. I agree that it's all too easy to get obsessed with numbers and that a recovered anorexic needs to be free of the chains of counting calories, kg, etc.

    The difference is that my son isn't recovered. Not completely. There are still quite a lot of outstanding 'issues' that need addressing and calorie counting and scales are two of them.

    The thing is, as I've discovered from this journey, you can't sort out everything at once; it needs to be done in stages. Doubtless in a few months' time my posts will be about trying to break free from those confines. But at the moment the focus is on other issues. Don't run before you can walk, and all that...

    I also agree that "anorexia is not about food" (although food / nourishment IS medicine while someone is recovering) and that "measuring recovery solely on weight restoration is highly misleading".

    I am not doing that.

    I measure recovery in all sorts of ways.

    But I also know that, when Ben's weight drops, his pulse rate tends to drop too. Sometimes dangerously low. Once it was just 29bpm. So, in our case, ensuring we do whatever it takes to keep his weight moving in the right direction could actually be a life-saver.

    Another thing... This is a blog. And it's the nature of a blog to focus on whatever it is that's the current issue of the day, whether that's weight restoration or something completely different. If you click onto the PDF on the right (my entire 2011 blog) you will see that I talk about all sorts of stuff.

    But, because Ben is still recovering from anorexia, weight does rank very highly on the priority list.

    (I did take a look at that move BTW.)

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  14. Oh dear, some crossed wires here then..
    Firstly Anon, I'm so sorry to hear that you have been in the grips of an eating disorder and wish you the very best in your recovery.
    And Julie, apologies for the grammar correction. It's one of my little 'things'.
    As I pointed out before this is Batty's blog, not the rule book of eating disorders.
    If I wrote my own blog there would be some similarities, we are both parents of children with eating disorders who don't want to watch their children die. There would also be some very different comments, our days are not exactly the same just because our children both have an eating disorder.
    My daughter is a child with an illness, not an illness who happens to be my daughter. If she were diabetic I would have to administer the appropriate every day care to keep her safe.
    I fully appreciate that my daughter works so hard to beat this, I know she doesn't want it, I know also that she isn't doing it for attention. I try to pay the ed very little attention. However if I didn't sit and eat with her 4 times a day I doubt that she would go and help herself to eat the varied meals we eat together.
    Her weight does matter, because when she was at a dangerously low weight she was in hospital on bed rest (her heart rate was so low) She lost some of her teenage life because she couldn't go to school, couldn't meet up with her friends etc. Now she is at college and catching up on some of that partying she missed out on for the last 2 years.
    I don't measure her 'recovery' just on weight (although she would disagree with me sometimes, when I nag her a little) I am delighted that she wants to do things she would not have done a year ago, pleased that she wears clothes that she would not even have looked at..
    I'm very very proud of my daughter and the long road she has taken to begin her recovery.
    She knows that I will support her through thick and thin (excuse the pun, not intended).
    I will fight ed till it leaves our home whether it likes it or not..

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