On a scale of one to “I’m in the bowels of hell” this really has been one of the worst weeks in a long time. I can tell you, the bowels of hell aren’t too pleasant. It’s been a mix of a continuation of assessment work at the autism centre, a lot of physical tests at the GP, meetings & reviews with my CPN and, finally, a showdown with the team at Gloucestershire Eating Disorders Service. The outcome of that meeting was, in short, not good. That’s an understatement to be honest. I am divorcing them, but only because they have engineered it in the most despicable way imaginable. They would say they are “getting tough with anorexia.” I would retort that within this is still a person, still Simon Rickards, still dignity. Why am I divorcing them? And in reality, am I ACTUALLY doing so or are they actually giving me no options at all? In reality, are Gloucestershire Eating Disorders Service washing their hands of me, giving me an option that they know I am in no place to be able to engage with and therefore fully aware that I am going to be off their hands anyway. And if they know this how can they happily allow it? Here’s the thing; I actually asked that question. The answer is horrifying.
As my physical health has been deteriorating lately with anorexia’s stranglehold taking an even stronger hold, I had begged for further treatment and, with advocacy from my CPN, the ED services had re-engaged with me. I begged them for further inpatient treatment, afraid of my own vulnerability at the mercy of the eating disorder’s will and not trusting of my own strength to be able to engage with their day treatment programme, the very one that I had failed at right at the start of my descent into all this when I wasn’t as bad as I am this day. There was resistance to my pleas but I felt like maybe I was getting somewhere, particularly given that the physical issues were becoming ever more serious. Yesterday’s meeting was with not only my care co-rdinator, but with the decision maker, the man who decides what options to give a patient in the services’ care. After keeping me waiting almost an hour past my appointment time and barely apologising for it they began a line of questioning that almost made me feel like they were calling into question my whole diagnosis. I stopped them and asked them if they thought I was making it all up, becoming emotional. They assured me this wasn’t the case. They checked my weight. Still very low. They checked my pulse. Still very low. They acknowledged my low body temperature and so on. They could clearly see just what state I was in. But they were being very abrupt, almost to the point of how a boss speaks to an employee that hasn’t been doing their job properly. Now, I know that people with eating disorders have to take some responsibility for their recovery, I get that, but at the same time when you are very ill, and have had zero help, support or therapy for over 12 months it’s bloody hard! Their approach took none of this into consideration and I felt like my dignity as a human being was being compromised. At this point we hadn’t even got to the hammer blow.
They have decided that under no circumstances will they offer inpatient treatment. They also regret ever giving me inpatient treatment in the past, suggesting it did me no good (well, it didn’t, but only because it was handled badly) and that it doesn’t matter how I am now or will be in the future it won’t be happening again. There are a variety of treatment options accessible through them, however I can only access them through one route; by doing their day treatment programme. Now, if you have an eating disorder what I am about to say may be triggering so read on with that warning in mind or close the browser now. Otherwise those without or accepting the warning; I haven’t eaten a proper meal since I left the last eating disorders unit in Bristol this time last year. Anything that I’ve eaten out of the boundary of what my eating disorder dictates…well, I’ll just say I deal with it, again as my eating disorder dictates. Rules of day treatment; eat ALL food within 20 minutes. There is NO flexibility. Outside of the programme, at home, you are to follow the agreed meal plan and not engage in any eating disorder behaviours. Ok, all fair enough – people go on that programme to get better and sign up for that. Understand this: I WANT TO GET BETTER. I want to get control. I may never get rid of this completely, but I want control. So take that as read before we go on. Back to my point. I have not eaten properly in over a year. There is no chance in hell that I am going to be able to go from where I am at this moment to eating a full meal (with pudding) in 20 minutes. There is no way that I am going to be able to spend 18 hours a day in my own company outside of day treatment, and weekends, and be able to not engage in behaviours that have dominated my life for approaching two and a half years. It doesn’t matter how much I want to be better than I am, I am mentally ill and at this stage, right now, as things stand, day treatment will not be an option I can realistically succeed in. They know this, I know this and I am sure that anyone reading this will understand and will come to know this too.
So I asked them this question: “If I come on day treatment and fail one meal, what will happen?” Their answer: “We will discharge you from the programme and from the service.” So I asked them; “What if I don’t do the day treatment programme?” Their answer; “We will discharge you from the service.” My final question: “So you would knowingly, wilfully and happily discharge someone and give no help to someone with anorexia, who is as ill as I am?” A one word, cold, emotionless response: “Yes.” It was at this point where they claimed they were being tough with my eating disorder and not me and didn’t offer any support when I was clearly distressed. They told me to think it over and tell them next week. In my emotional state I told them I would if “I was still here.” They knew what I meant, read between the lines and you will too. I didn’t mean it but I felt it in the heat of that moment. Their response was to quickly usher me out of the room and escort me out of the building as quickly as they could.
I have given them many reasons why I believe things could be different with treatment at this point in my illness. Sure, I am much worse than I have ever been, but I believe that if I can get on the recovery path there are things that I can focus on now as a way forward. I’ve not had that before. My passion for baking, healing broken relationships, real concrete and good things that weren’t a part of life when I tried to engage in treatment in the past. Before I came out of treatment to….nothing. Now it would be different. This situation I’m in now is frightening, because I am going to have to rely solely on myself. I now have nobody to turn to in a professional capacity to help me fight and get control of this illness that has controlled me all this time. I know now that I am stuck with this for life, and I need to find a way to survive it for as long as I can, so that I can live.
I‘m not going to do that day treatment programme. I don’t want to suffer the indignity of being thrown out of a building in front of 9 other people who are all struggling, I’ve already had that happen and it’s a horrible and embarrassing feeling. Dare I say, it’s even more triggering than some of the more obvious things people expect. Also, because of how I’ve actually been treated on a human level I wouldn’t want to be treated by the individuals who operate within that service. They place no value on me as a person, don’t allow me any dignity, respect and have never listened to any of my views about my treatment. This ISN’T just about them not giving inpatient treatment when I’ve asked, there have been many MANY other times when I have been ignored, belittled, talked down and insulted (once they actually had to formally apologise to me) and I actually think they have done and would continue to do more harm than good.
So that’s it, this fight will have to start again, only I can only rely on one person. Me. I have absolutely no idea where to begin, how I will make even a baby step forward let alone a normal sized one. At the moment all is as was yesterday, last week, a month ago. At some point I need to find a starting point. One things for sure, it won’t begin with that team, ever again.