9th September 2014
I was asked recently 'As a sufferer of anorexia, what do you think that you need to get better?' As it is my ultimate goal to open my own ED therapy centre when I have achieved recovery, this question has been on my mind ever since. After all why are so many people suffering in silence, not getting the right treatment or relapsing? Something needs to change.
All eating disorders are very complex illnesses and highly personal to the individual. The approaches I am going to suggest are based on my own experiences and those of fellow sufferers. I truly believe that we hold the key to unlocking the ignorance which surrounds eating disorders. We have first hand experience not only of the devastating effects of these disorders but also of the treatment that is currently available.
The first piece of the jigsaw is recognising that you have a problem. Some people are better at this than others and some would much rather stay in denial. This is where raising awareness of the illnesses comes in. The more information that is available to people about eating disorders the better. As a former teacher I believe that educating children from a young age about how to feel good in their own skin and raise their self esteem is fundamental. Adolescents need to be made aware of the dangers of engaging in disordered eating. All too often diets are glamorized by the media. Teenage girls and boys need to be shown how pictures that they see in glossy magazines are airbrushed to achieve perfection. This strive to perfection is fruitless because there is no such thing. Real people do not look like the images we are bombarded with in the media. I will not buy certain magazines on principal as every other page is about someone's weight. Measurements and weights are cited regularly although I doubt very much that the journalist has been graced with the A list celebritie's presence that very morning just so that he/she could step on the scales. Any amount of weight gain if you are in the public eye is pounced upon. Women are villified for having cellulite and diet plans are plastered all over magazines that our young people are reading.
We need to show young people how to be happy, healthy and love themselves.
For those who are unable to see the trap that they are falling into or who prefer to stay in denial it is important that parents, families, partners or carers are made sufficiently aware of what to look out for. They need to know how to spot the signs so that they have a better chance of helping the sufferer to admit that they have a problem. Knowing how to talk to sufferers is difficult but confrontation is not the way. If people understand the psychological torment that these illnesses cause they will be less likely to focus purely on the physical effects.
Once the sufferer has recognised that there is at least some sort of problem. The first step is to see your GP. It is important to remember here that GP stands for 'General Practitioner' you cannot expect your doctor to be an ED specialist. Plus GP's are overworked and have very short appointment slots. I have nothing but praise for my wonderful GP who gives me double appointments and sees me every couple of weeks, more if necessary but I am outraged when I listen to the stories of others. Fair enough they are not specialists in the field but to send someone away who has poured their heart out and fully admitted that they know they have anorexia to get physical evidence first is diabolical. Once you have talked to your GP he/she will refer you to your local Eating Disorder Service, clearly the quicker this is done the better.
Now is where I feel the real heart of the problem lies. Firstly it can take months to get NHS funding during which time many people deteriorate significantly and secondly the treatment when you eventually get it in my opinion, an opinion, which is shared by a number of fellow sufferers leaves a lot to be desired.
Once referred you will undergo an 'individual' assessment. I use the term 'individual' loosely here as in my experience this has mostly been a ticking of boxes exercise so that you can be categorized dependent on your BMI. My personal circumstances, my attitudes and emotions were not taken into account when my treatment plans were put in place.
Eating disorders are borne from low self esteem and a lack of self confidence. Sufferers feel that they are worthless because they cannot meet the high standards they set themselves in all aspects of their lives. Anoretics tend to be perfectionists who need to feel in control. They are extremely sensitive to criticism and blame themselves for anything in their life that may not be perfect. They crave success and so they attempt to find it by losing weight as this is something that they can do on their own. It is their own personal challenge.
Bearing all of this is mind, imagine how much damage it does to someone who is battling this inner torment to be told in assessments that they are not thin enough or that they do not fit the criteria for help. It is hard enough to have to go and admit that you are struggling but to be then told that you are fine and dismissed without any dialogue about how you are actually feeling is soul destroying. I have suffered this humiliation on more than one occasion and every time that I have been told that I am managing just because my BMI was not critically low. I have gone away hellbent on becoming a 'proper anorexic' as I quite simply felt like a fraud. My BMI may not have been in the danger zone but my eating habits, emotions and self hatred were all definite proof that I was not managing and not fine at all, but nobody assessed this. More thorough assessments are required so that the treatment plan addresses the individual's needs.
Sufferers of bulimia generally have higher BMI's than anorectics. In my area you go to one service if your BMI is 17 or over and another if it is lower. Yet more categorization. During my bulimic phases I was passed on to the other service and this reinforced my feeling that I was a failure. I was too fat to attend my former service, where I had forged an excellent rapport with a consultant. Bulimia is every bit as serious and as dangerous as anorexia but I have never seen it dealt with as such. When I was bulimic I was on a deliberate self destruct mission. I know I didn't purposely think to myself ' I am going to become anorexic and stave myself to death' but I wanted to hurt myself when I was bulimic. I was more out of control, more depressed and deeply ashamed of my disordered eating. The stigma attached to vomiting makes it difficult to share your thoughts and talk about your behaviour. Just like anorexia, people just don't understand the illness. They cannot comprehend the addictive, destructive cycle that bulimics are trying to break daily. My therapy at this time consisted of talking me through the bulimic cycle and drawing up meal plans to prevent me from bingeing. The problem was that as no one ever got to the bottom of why I was doing this to myself I found it incredibly difficult to break the cycle and the only way that I have ever managed to do it is to start to restrict again. Yet more self punishment. My CBT was not helpful. I was told things like 'You know you only ever get about 50% of all that food back up' This just made me go to more extreme measures to get rid of the food. My CBT sessions were mostly about my family background, as my therapist seemed to want to apportion blame to someone for the mess that I was in. This caused unnecessary arguments and bad feeling between me and my family members. What I needed was to understand what was compelling me to do this to myself. I have still not grasped this. This is what I need to do to recover.
My therapy for anorexia has been varied and for the most part unsuccessful. Once more my CBT was often centred on my past and not the present. Nobody worked out why I was anorexic. I still don't know to this day. This to me is the crux of the issue. If you can chip away at the underlying self esteem issues the iceberg effect should eventually come into motion and the multi faceted dimensions of the need to remain in your anorexic bubble will melt away.
My body dysmporhia was touched upon briefly but this is another area where my treatment has been substandard as I have failed to overcome it. This was not helped by one of my CBT therapists, who put me on the scales and told me that I had gained 8 pounds in a week. She made me stand in front of the mirror and I couldn't see much difference from the week before. No wonder she had converted kilos to stones and pounds incorrectly and I had actually gained 1 pound. In the time it took me to persuade her to recalculate I was hysterical, as not only had I gained all this weight in a week I was being reprimanded for binge eating! This very same therapist told me to get myself a bottle of wine, a takeway and a bar of chocolate. Great advice to a former bulimic. This just reinforced that what I saw in the mirror was correct. I could judge that fine. How can therapy like this possibly be helpful?
I have had family therapy, which was very poor. This may be because I am an adult though and the only person who would go with me is my Mum. People with less disjointed families I feel would find this helpful, depending of course on the competency of the therapist and the willingness of the family to engage. I have experienced hypnotherapy, which I found quite useful as I find it hard to relax. I think that this is true for many anoretics, so is a good idea in my opinion. I have seen 3 dieticians of which only one seemed to treat me as an individual and not just give me a blueprint of what I should be eating. Again each sufferer is different and will require a different approach.
I have also found that EDS are very quick to discharge people when they have gained weight. In my opinion, this is when you need the most input as you are trying to come to terms with a new body image and people who don't understand the illnesses will just expect you to be completely cured and ready to face the world again. I know of sufferers who have been discharged and told that this is because they can no longer get funding due to their BMI (which is still an anorexic BMI) so they are left with no follow up care. Surely it is imperative at this stage to prevent relapse? This is a major flaw in the system.
I have attended daycare, which was quite frankly diabolical. The first session was run by a dietician and the content of the session was more suitable for primary school children than a group of adults aged between 18 and 60. Group therapy was only useful due to the bonds we formed as fellow sufferers and one of the sessions was run by somebody who has no training as a therapist. I do believe that daycare could work but this particular programme needs a dramatic overhaul. This is my mission, to devise a structured daycare programme, which will motivate and inspire change.
Trust and abandonment are 2 common issues for sufferers of eating disorders. These are 2 key components to effective recovery. You need to feel safe and trust in the people who are involved in your care. My experience of this has been truly awful. At one particular assessment I was told that I had to go inpatient but number 1 it would be a struggle to get funding at my BMI (this of course made me think that I would be the biggest one in there) and number 2 that there would be a 3 week wait for a bed. This pleased me as I am opposed to inpatient treatment (more about that later) but nobody contacted me in these weeks. My Mum rang the hospitals concerned and could not get a straight answer as to the bed situation. I was in a horrible state of limbo, my life was on hold. By the time a bed was available I had managed to gain just enough to stay out. Inpatient treatment has been suggested to me numerous times recently. One week there are beds, the next week there are not. One week I am high priority the next week there is a more chronic case than me. I was lied to about being on waiting lists, lured into appointments about inpatient treatment despite the fact that I had made it more than clear that I wouldn't agree to this. I was then threatened with the Mental Health Act by the same person who promised me that there would be no sudden moves about my care. The way that they tried to section me was so underhand that I became too afraid to engage with the service. They have now discharged me or should I say abandoned me. I can no longer access my CBT therapy despite the fact that I have funding. I have quite simply been kicked to the kerb. I cannot describe the debilitating effect that this has had had on my self esteem. Nobody should have to suffer this.
Another patient at the same service was brave enough to admit herself into hospital voluntarily. The same situation ensued. Every week she had her case packed ready to go in and was told that were no beds. This went on for so long that she lost faith in the service and at her next assessment she was told that there would be no inpatient treatment available to her as she no longer fitted the criteria for ED treatment. She has now also been discharged and is terrified of relapsing. Where is the logic in this? Quite frankly this is unacceptable and all of the mistrust and false hopes are likely to feed the illness further. We need to have confidence in our care network if we are to thrive.
My last point about inpatient treatment is brief as I have never experienced it myself. I have however listened to many stories from people who have been in and out countless times and who have still not overcome their demons. I am against inpatient care as from what I can ascertain, they simply feed you up, you gain weight and they discharge you. There is virtually no therapy and little individual care. You are sat around eating all day with some basic activities like art therapy available to help to kill the boredom. How this would help me I have no clue. I would be made to eat poor quality food that I don't like. Have to lie around in bed or sit around trying to digest the food that has been forced into my stomach. Utterly terrifying for someone with such as active mind. Anorexia is about control, so how do they treat it? They rob you of it completely and no doubt take a big chunk of your self respect with it. It is little wonder that people come out and relapse or end up with other issues as they have been so traumatized. I have made my own life very difficult by my refusal to inpatient treatment but I had done my homework and I don't think it is for me. I accept that this will be a controversial view as there will be people who credit their hospital stays for saving their lives. Like I have stressed throughout this piece everyone is different, one size does not fit all. I do believe that inpatient treatment could work but again it needs to be tailored to the individual's needs. Much more funding needs to be put into the treatment of eating disorders if people are to fully recover and go on to lead happy and fulfilling lives.
I now have to rely on the support of my family, my partner and my GP to get me through the bad times but ultimately when I break free it will be down to me.
Arnie will be taking part in the London Marathon to help raise money for SEED
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