I am Richard and I am going to share a story that many of you will find familiar. That’s because, like so many, I found myself on the conveyor belt that is the mental health system. I’ll try to leave the particulars of my case out of this article – partly because I want to focus on the processes involved on this conveyor belt and ways I navigated them (or didn’t) and partly because the particulars of my case are very personal to me. These personal details form the core of who I am and so, of course, strike deep emotions and contemplations in me. By being on this conveyor belt I’ve learnt that it is unwise, largely counterproductive and totally draining to share these details with anyone but those most loved and trusted.
Anyway, I was 26 years old when I was first placed on this conveyor belt. I was studying at a top university; life was the best it had ever been as I was following my dreams and every little thing was falling into place (or so it seemed!). Dreams play a significant part in my story. Again, I shall not detail these except to say that the most significant dream, central to this story, involved me at the edges of a river desperately stretching to try and grasp a golden coin before a hideous monster came and finished me off. In it I knew I had to get this coin and I knew I could. This dream would eventually take on a much deeper and multi-layered meaning.
So, one month before I completed my degree, I found myself sitting in a room with two psychiatrists trying to explain to them the reason I had behaved in a way which was flagged as being unusual and potentially harmful. Being intelligent people who deal with many complex cases, I thought they would understand and dismiss the whole thing and that I’d be on my way.
It really didn’t turn out like that.
I was taken to a psychiatric hospital and was now explaining and re-explaining under the scrutiny of several of the staff there. I remember thinking that there was no warmth with them – I was an object for their cold examination, a science project or suchlike, nothing more. Of course, I was completely unaware at the time that this would be a recurring theme amongst those higher up in the chain of command in these places, who seemed to listen but really could not hear me at all. I am articulate and have reason for my actions. I thought I was explaining myself well; ‘I’ll be out soon’, I thought at that time.
I was kept at that place for ‘assessment’. The assessment lasted several weeks which meant I failed to complete my university dissertation. After this time I was placed on a section and told that I would be medicated for ‘psychosis’ or, more specifically, ‘persistent delusional disorder’. I questioned them every step of the way as I needed to make sense of what was happening to me and why. When they came to give me my first dose of medication I asked them what would happen if I refused. I was told that I would be restrained and possibly sedated so that they could inject me with their chemicals. At the time I was considering putting up a fight as I had realised the whole situation was now quite ugly and it gave me a gut feeling that things were very wrong. However, the man who explained the situation with medication seemed like he had some empathy for my displeasure and so I conceded to take medication orally. The drugs knocked me for six, made me feel so slow and ‘zoned out’. It was really very hard to hold some level of concentration or alertness. It felt like it was taking my spirit from me.
Fast forward eight years and I was nearing the end of the conveyor belt. During those eight years I had spent time at two psychiatric hospitals (nine months in the first and one and a half years in the second) and, as a step down from that, was put on a Community Treatment Order (CTO) and placed into two residential care facilities (two and a half years in each). I initially took up the offers of tribunals but then gave up on subsequent ones as they seemed a total waste of time. The solicitors provided to represent me were virtually mute and the panels seemed to collude to reach the same conclusion on each hearing: ‘remain on the CTO’. I had absolutely no control of, or any real input into, my situation. In addition to that, my challenging them and standing up for myself against their narrative of me and my life was deemed to be evidence for a ‘lack of insight’ and further justification to them to keep me in services.
As time passed, the attrition of being in ‘services’ for so long took its toll on me. I would stay in my room for weeks on end. I even went through a phase when my distress led to me wetting the bed (which of course compounded my situation and gave them additional justification to keep me in psychiatric care… the twisted irony of that!). I began to concede to the narrative that I was mad, disordered, permanently flawed. Either that or God was punishing me for making mistakes, or perhaps he had forsaken me altogether. This was a very dark time.
The conveyor belt is a long, slow and complicated process. Some never get off of it. Some get processed and dumped in the waste bin so to speak. Some simply are unable to endure it and commit suicide. I have met people who fit each of these scenarios.
During my stay at the second residential facility (a place I am very lucky to have been placed in) one of the student nurses suggested I have a look at the ‘Drop the Disorder’ Facebook group. At the residential facility I found that some of those on the bottom rungs of the ladder of the mental health system were really quite nice people, blameless, actually quite supportive in the real sense of the word. Some clearly were absolutely terrible in so many ways – abusive, dismissive, ignorant, arrogant, patronising, belligerent – you name it! There could be many explanations for this which could be considered on a person to person basis but generally these places often do not offer encouraging, edifying environments.
Moreover though, and far more unsettling than this, are those quite a bit further up the ladder, namely the psychiatrists. They are the ones who make the decisions and pull the strings and I can honestly say that I didn’t like any of them. They had no personable vibe that I could work with and it was they who had me stuck in this nightmare with no tangible hope of escape.
Anyway, I joined this ‘Drop the Disorder’ group and started to read some of the posts and, after processing the various content, realised that not only were there people who had a similar view and experience of the mental health system to me but there were actually some very informed contributors and articles with links to further information. In accordance with my situation I had researched the particulars of my diagnosis, of sections, of my medication, of CTOs, tribunals and the benefits system. The information and ideas in this ‘Drop the Disorder’ Facebook group really did get my attention: the corruption of the pharmaceutical industry and how it permeates all aspects of the mental health system and society; the sinister history of psychiatry and its practices; the challenges to the medical model of mental issues and alternative approaches to this medical model, etc. etc. – a huge resource and the ‘rabbit hole’ (to use a cliché) of knowledge about the mental health system went as deep and as dark as I cared to go.
I would read it and research from it daily – these people ‘got it’ and I found that totally liberating. It felt like the universe was opening up for me again. I was renewing my energy and drive. I was right all along in that I had good and justifiable reasons for my behaviour and actions and that the mental health system was indeed a mostly dark and sinister entity.
After a while I was due an obligatory tribunal. This time I felt better ‘armed’ and equipped to challenge them in a language they understood (despite having experimented with it on my psychiatrist and ‘care’ team who appeared to take more note of what I was saying but continued to make the same decisions and explain away my new reasoning). My new found insight and knowledge, however, exposed the glaring flaws in their arguments. This spurred me on. On several occasions I had my psychiatrist stuttering for answers; what a great encouragement that is!
I was lucky to get a good and genuine solicitor to represent me and on 14th January, 2020, the decision of the tribunal panel was to remove my CTO! I couldn’t believe it. I had not heard of anyone who had been successful in a tribunal. I actually cried and, after a debrief from my solicitor, had to go for a walk to gather myself. I had actually come to the end of the conveyor belt and was reasonably intact. This was, and is, a miracle.
I’m now living in my own house, meds free, and I actually feel like I have my life back. MY life. I have regained my sense of self and can look to the future uninhibited by that hideous monster that came so close to claiming me. The medication is now out of my system and after so long on it I am amazed at the difference I feel and bewildered at how I managed. For so long the medication had me at a disconnect with my spirit and I really notice this now – there is a much more dynamic and richness to my being. You don’t realise until you come off medication (after being so used to it) just how much it mutes and dumbs your humanity.
I am no longer naïve to just how backwards and twisted the system is and have lost an innocence with that realisation. I am stronger for it. I will forever reflect upon it.
Yes, I had dreams to guide me, yes I was extremely lucky with the social worker, solicitor and second residential placement and yes I had a supportive (if not so insightful) and understanding family. But largely thanks to the information and ideas contained in the ‘Drop the Disorder’ Facebook group, I found a way out of the monster’s jaws and belly and retained something of great value.
Whilst this is fantastic for me – someone who has the faculty to research, articulate myself and navigate/perceive the sticky web of the mental health system – there are so many in that web who are totally helpless. I wondered if the system targets largely the more vulnerable and uneducated in society or if the length of time and effects of medication rendered most ‘service users’ full of apathy and passive compliance with their situation, especially in the residential facilities. I suspect it is a saddening mixture of both these circumstances. These most vulnerable of people are those that advocates of the ethos of ‘Drop the Disorder’ need to keep fighting for. For people trapped in the mental health system it really is a desperately dark and sad situation.
There is a hideous monster in a dangerous river with designs to consume souls. The tentacles of this monster coil around all aspects of society. But the people that find themselves in that dangerous river possess something of value and that something – with effort – can be grasped and retrieved where it can then be used for great good.
Thank you Richard,
I am so sorry to read of your experience but inspired that you are speaking out. That you are part of a community.
I too have had psychiatric services for decades. I was a 21 introverted girl when a male GP thought I had an eating disorder. No, my lack of appetite, bloating, abdominal pain and nausea was coeliac disease but it took nearly 30 years to get that diagnosed.
Drop the Disorder is essential. I have spoken to several charities who deal with gut issues where young people have said they were not listened to, fobbed off with eating disorder diagnoses, psychiatric input and put on antidepressants. My favourite slogan from the Crohn’s and Colitis website is Cut the Cr**.
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