Category: health

How are we doing?

This is a question that we ask ourselves, how are we doing? It is never about me, but us. As I have said, this illness does not like it when other people interfere with what it wants to do or how it wants to interact with the sufferer. You notice, I see this illness as a separate being, it is a bit ‘us’ and ‘it’.

The invisible enemy and friend – I say friend because my son sadly sees his illness as oddly supportive of his anxieties serving the function of containing his overwhelming feelings, obsessive compulsive thoughts and vulnerabilities. I understand this scenario -isn’t it the case that we all to some degree have to have a level of containment in order to function. Illness, I guess,  is when it takes over and we are dictated to and our days are taken over in a way that we are controlled by it. It is a vicious cycle though, because the sufferer is stuck with managing their feelings using their eating disorder or being overwhelmed and not coping at all. So it is a cycle of dependency on behaviours that the sufferer knows about (because they are usually very clever) but feel powerless to do anything about. It is an understatement how annoying this must be for the person suffering with these symptoms.

We all wish there was a solution, preferably a quick and easy one for these complex symptoms and dynamics. But most people who have been caught in the middle of these problems is that there is not a quick and easy answer. What we have found after the first few treatment rounds failed, is that we have had to try different things in the hope that it will make a difference. I think that it is about helping my son find something that is bigger than the illness itself, that make life worth living. We have recently been exploring Buddhism, which has the most amazing and insightful philosophy imaginable. My son is truly enchanted with this way of thinking and although it is a small crack showing a little light, as delicate as it is, it gives us hope, hope that there is something that will offer my son a will to live and breath as he so deserves. And that is it – hope – that word again – we have to have hope. All of us, even without severe mental health problems in our lives need hope for better lives, a secure future and job, hope that we will be successful and feel comfortable with our lot, or hope for whatever your personal preference is, but without it, we are lost and the illness, or darkness, or negative thought patterns, or whatever your poison is,  is securely in the driving seat. So I hope my son never gives up hope as we will never give up on him.

 

Introduction

This is a personal blog which aims to reach people who have experienced or are experiencing an ongoing and severe eating disorder in their families – or with friends. This is an insidious illness. It takes everyone within reach with it. I have seen my son suffer over the years with little or no support or real understanding from services – not their fault, but no one seems to know how to treat this illness.

In the UK weight restoration is seen as important by Eating Disorder Units, alongside Cognitive Behavioural Therapy, group therapy, maybe some one to one, but looking at it 10 years in, my experience from seeing it, is that this approach does not seem to work for most sufferers.
People who succumb from this disorder seem to be high on the IQ side, really very bright individuals. It is sometimes thought that this is a pre requisite to being good at manipulation, but what does this mean really? It simply means to me that they will not be fooled by systems such as CBT which is designed to ‘trick’ the brain into a different behaviour, that these people usually understand their motivations and disordered behaviour better than anyone else including professionals who work with them. This leaves them stuck in rather than manipulating. It may be that there is a therapeutic process – some therapies might work for one person and have no impact on another which is firstly directly in conflict with the NHS treatment system that will treat with practice which is thought to be the most effective from research. Secondly, a therapeutic process can take years to find something that works for an individual and may also depend on opportunities rather than ‘readiness to change’ and other, more complex reasons such as social situation.

Amongst other things services look at ‘recovery’  on weight gain (which is the way Eating Disorder Services measure their statistics and justify their success to government bodies). In short, this is not recovery – it is what it is – weight gain which is very uncomfortable for most sufferers.

This system is what we have found within services we have asked for help from for our son. After 10 years, we feel it is time the powers that be recognise that this does not work for everyone, from what I have seen, it barely works for anyone who has this horrible disorder.  Unless services get in at a very early stage, and I mean early, this generic approach has little chance of success in my experience of watching many people who suffer from this illness trust and be failed by this way of working.

More often, long term, or SEED sufferers need to be supported to try to find a way of living with their eating disorder, and this is where we have got to. As sad and painful as it is for us as a family to accept that our son may never be ‘well’. We need to be realistic. And he wants some quality of life, which to him means not bingeing and purging to stave off hunger, and trying to eat at least something to sustain some weight. But are there services prepared to try this way of working?