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.
For the past week I’ve felt like I’m permanently staring down the barrel of a gun or completely trapped. It’s a horrible feeling, a feeling created by the worst of circumstances at a time when I probably need help the most. Those who are in touch with me on social media might be forgiven for thinking that I’ve been making an effort to do a bit more of the things I’ve been trapped from doing. My last blog entry indeed suggests this, but actually things are going badly. Very badly.
I had an appointment with my psychiatrist just over a week ago. He is part of the recovery team, helping me more with day to day integration, coping with my anxiety issues and Asperger’s. During that appointment he posed certain questions that unnerved me, centred around the possibility that I could be discharged from the care of the eating disorders service. I was stunned at the mere suggestion. Lately the anorexia side of things have taken quite a kicking and, with necessary sensitivity, it’s obvious that behaviours are out of control and physical repercussions coming to the fore. The justification for the suggestion was due to the lack of progress or engagement in any meaningful treatment since discharge from my last inpatient admission in February. As I pointed out this had been due to my moving and the eating disorders service wanting to ensure my work with the recovery team being established so that cross agency involvement could be created to devise a way forward. I hoped that he was simply “shooting fish in a barrel” and that I could query this with my care co-ordinator at the ED service at my appointment last Friday, but I didn’t like the fact he even brought it up. Anyone who has experience with eating disorders know that this kind of thing can be a trigger, and that’s the last thing I need when things are as bad as they are at the moment.
My appointment at the eating disorders clinic didn’t go as my care co-ordinator was obviously planning. I don’t think she had any intent of discussing any of this with me, indeed that was what she intimated as soon as I queried what had been mentioned in my appointment with the psychiatrist. She confirmed everything he had said and then detailed my options. I was horrified. They are indeed looking to give me a ‘therapeutic break’ from treatment (temporary discharge, let’s not dress this up) unless I took the only option open to me. This option, in reality, isn’t one…not for where I’m at.
Gloucestershire Eating Disorders Service is one of only a few in the country that offers a day treatment programme. Just after my diagnosis of anorexia I was referred onto this programme but was discharged from it after just one week. The programme is meant to last eight weeks. They have very strict guidelines, one of which is that all meals are completed within a set amount of time. These rules are there to ensure that you are committed to the programme, your recovery, and to protect the recovery of the other patients. I understand the rules, I accept them but at the same time I understand that if you can’t stick to them you can’t stay. I also acknowledge that if you can’t adhere to them that you aren’t well enough for the programme, and that your illness is more severe than that programme can accommodate. If that’s the case then other treatment MUST be instigated, simply leaving someone to fend for themselves should NEVER be the way.
My care co-ordinator says this is the only option open to me at this time. If the programme wasn’t right for me at the start of my diagnosis there is NO way it is right for me now, not when my illness is so much more progressed, my behaviours are far worse, my weight so much lower and my food fears so much more profound. I know exactly what is expected of me there and should I accept a place I am certain that I would be discharged very early on. The net result of that would be damaging in the extreme and that’s something I am simply not prepared to face. Things are bad enough as they are, why would I do it? This, to anyone reading who has no experience or understanding of eating disorders, must seem ridiculously defeatist. I am being nothing more than brutally honest with myself and what I know of where I am. With all the will in the world and desire to gain control over this BASTARD of an illness it has me on the ropes. Even if, hypothetically, I went and did the programme I would still spend 20 hours a day at home. That’s a lot of time at the mercy of all that goes on in my head, not being supervised through meal times, not being stopped from carrying through on behaviours that might undo anything I might do in day treatment. It’s all that happened before.
Our conversation then progressed and she posed the question of in-patient treatment again. I had been thinking about this as an offshoot of my psychiatrist appointment. He had asked me if I thought I would benefit and although I’d been resistant to this point I have become so desperate to regain some life back and some control that I realised that this might actually be the best way forward. I began to get tearful for the first time in a long time and nodded in agreement. I wish she hadn’t asked the question. It would seem that the NHS Commissioners will not sanction inpatient treatment for me again, especially in view of day care treatment being an option. Given the reasons I have gone over above this leaves me in the wilderness. Day care treatment would be, I believe, catastrophic and inpatient treatment isn’t allowed. I don’t blame the NHS for this, nor my care team really – this sounds like a funding issue and isn’t the first time I’ve been in this position. You have to admire our government don’t you? Oh no, you don’t!!!
So here I am. The wilderness. The eating disorders service haven’t formally put me on a ‘therapeutic break’ yet, they want to have a meeting with me and the recovery team, alongside my GP, and then they will. It’s here that I have to tell them my decision in regard to day treatment, but, in truth, I see no real prospect of me engaging with that for all the reasons I’ve said. Meanwhile I am physically getting worse as the anorexia has a field day with my vulnerable state. Even at that appointment with my ED care co-ordinator my weight had dropped and has continued to do so, not because I’m proving any point, but because I am that ill. And the worst thing? I’m still not 100% sure these professionals completely listen to me. Yes, I’ve always had mental health issues. Yes, I’ve always had food issues but just today I had a letter from my psychiatrist following up on our meeting suggesting that maybe all of this might just link back to my being on the autistic spectrum. It’s at times like this I am really at my most vulnerable, when I can’t see any way out. My sole issue right now, or rather my primary issue, is that of my eating disorder. I need help with that and that alone. If I can’t get it I have no future, it’s as black & white as that. Yet here I am facing the prospect of losing the support of both the ED and recovery teams.
I’m trapped. I feel like I’m staring down the barrel of a gun. I’m looking for a future that doesn’t seem to exist and all the while this pig of an illness is mocking me, making me scared and won’t let go.