I hope at some point to write a more in depth biographical piece, to really give you an insight into the full nature and complexity of the illness, and my Obsessive Compulsive Disorder (OCD) in particular. However, for now, I think it best I give you a brief, more succinct, introduction to me and my OCD.
I was actually only first diagnosed with OCD in 2010, during my second year of University. I had been struggling all throughout first year, however, an incident that occurred just before Christmas in my second year sent everything into overdrive and I became completely paralysed by it.
Obviously, at the time, I was not aware what ‘it’ was, but I knew something was really wrong, I wasn’t well, and couldn’t cope; I needed help. My best friend, whom I was living with, knew something wasn’t right too. He contacted my Dad, as he was worried. I had also contacted my Mum and Dad, and told them what was going on and that I needed to get help.
Luckily, as I was a student at the time, my Dad’s health insurance policy meant I was able to be seen, almost immediately, at the Priory in North London for an assessment. I prepared for my appointment with the psychiatrist there, documenting everything I was struggling with, at that moment in time, and any problems/issues I had had, and been through, during my childhood and life up until that point.
I brought the document I had prepared to my appointment and proceeded to go through it, bit by bit, with the psychiatrist. When I had finished, or perhaps even slightly before I had, he stated quite clearly, “It’s obvious what we are looking at here, it’s a classic case of Obsessive Compulsive Disorder, OCD”.
I felt stunned, and taken aback. I expected he would just say something like, you’re under a lot of stress at Uni, you’ve just worked yourself into a tizzy, and you need to take a couple of weeks off to rest and chill out. After that, things will calm down and you’ll be fine.
He opened a book and read/showed me a definition of OCD. He asked me if I could see how my symptoms fit, and how this was what I was dealing with. Still in shock, I don’t think I really took in any of what he was saying. I left feeling bemused and confused. I felt like I had been branded. I had OCD, a mental illness. I didn’t like how it made me feel.
I can’t remember if it was the next day, or the day after that, but a book on OCD, that I had been asked by the psychiatrist to order, arrived. I immediately opened it and read it cover to cover in one sitting. It was uncanny, one of the weirdest experiences of my life, it felt as if the book had been written about me, like I was reading my biography. Everything I had written down in preparation for my appointment, all the issues and problems I had had in the past, and now, were contained within this book, they all fit under the umbrella of OCD. Any doubts I had about the diagnosis vanished immediately, it was clear the psychiatrist was right, what I was struggling with all this time was OCD.
I think there was some initial relief upon accepting this. I now knew what I was dealing with, and all the problems I had had in the past made sense now. I felt a little less like it was my fault, I had been suffering with an illness.
Once the relief wore off, I immediately threw myself head first into therapy. I began, what at that point I didn’t realise, would be an incredibly long and arduous journey. I received Cognitive Behavioural Therapy (CBT), and Exposure and Response Prevention (ERP) therapy, for an hour. once every two weeks, for the duration of my time at University. It was however, a nightmare trying to juggle doing a degree, whilst also partaking in, difficult, and time-consuming therapy; and although I mad some improvements initially, the pressure and stress of doing both led to me breaking down and everything coming to a halt. I was unable to sit my finals at Uni and was just unable to function full stop.
Luckily the University were very supportive and understanding and granted me my degree ‘in absentia’, based on all the work I had done up until that point.
This was obviously comforting news, and I was hugely grateful and appreciative, as it would have been crushing, had all my efforts to stay and succeed at Uni, while battling my OCD, come to nothing.
I didn’t really have much time, however, to think about it, as I was in such a bad way. As I had left university, I was no longer covered by my dad’s health insurance, and so I was left without support or care. After meeting for an assessment with a psychiatrist, in a building next door to my GP’s, I was referred to my local Community Mental Health Team (CMHT). Once again, I did not know it at the time, (Although I was in a terrible state, I was actually hopeful and optimistic. I had finished University, so now, with the right help and support, I could focus solely on conquering my OCD. I genuinely felt that I could learn to manage it, and that once I had, there would be nothing preventing me from pursuing the aims and goals I had in life.) but I was about to go through the most difficult 6-7-year period of my life.
During this time, I was in and out of care with my local CMHT. The care they provided was sporadic, with long periods of no support in between. There were staffing issues, which meant I would see a new psychiatrist every three months, and there was no structure whatsoever. I did not have a regular psychiatrist, I never had a psychologist and I never had a care coordinator. My medication was constantly changed, and new ideas and opinions were thrown around, as each new interim/locum psychiatrist took over. There was just no continuity of care.
The treatments I received were almost always non-specific, with minimal evidential backing, in terms of their efficacy and suitability in treating OCD. They were often delivered as part of a mixed diagnosis group which meant the teaching/application was even more generalised and less applicable/helpful. Some of the treatments I received, psychotherapy for example, have been proven to be totally ineffectual when it comes to OCD. In short, the CMHT did not have the funding or the personnel to effectively treat someone with severe/refractory OCD.
During this time, particularly the large periods where I was left completely unsupported, I began to develop depression. I began to feel tired all the time, had feelings of hopelessness and lost almost all motivation. I overate at times, underrate at others. Sometimes I would sleep all day and all night, other times I would be awake all day and all night. My self-esteem took a huge hit too, as I could not understand how, in the UK, a salubrious country, there was not the help or support for people who were suffering with OCD and other mental health conditions. It was constantly in the news how the government were making cuts to the NHS mental health budget, and how physical health was being prioritised, while mental health was being brushed to the side. It made me feel worthless, like I didn’t matter. I wasn’t worth spending money on to make better, so that I could get back to work and become a contributing member of society again. The guilt, shame and lack of purpose I experienced, due to being out of work for such a long period of time, only worsened my feelings of worthlessness.
While awaiting acceptance to an OCD specialist service “The Maudsley” (Which I had finally managed to negotiate, (it having been suggested by a private OCD expert, almost two years prior) in South West London, I became completely housebound for a period of around 8 months. My OCD and Depression worsened exponentially during this time, leading me to feel suicidal. This culminated in me joining Dignitas and sending a request email for their application forms. As those of you who know me will know, I then announced on Facebook that I was going to pursue assisted suicide via Dignitas and that I hoped everyone would understand and support me in my decision.
I genuinely didn’t mean to upset or scare anyone by doing so, and I’d like to take this opportunity to sincerely apologise for doing so. I was absolutely desperate, at my lowest ebb and felt totally hopeless. I was in such pain and torment that I just wanted it to end. I felt like I couldn’t face it anymore. The help I needed was never going to come and I just couldn’t go on like this.
Luckily, it wasn’t too long after this, perhaps a few months or so, that I was referred to Springfield University Hospital, the NHS national specialist unit in London. I was accepted onto a 6 month intensive inpatient programme for severe and refractory OCD. I am now receiving treatment from a specialist and expert team. I have made great strides already and I hope that I will leave here with the tools to manage my OCD, and the ability to do so, while pursuing the things I want from life.
I have stated as part of the About section of this blog, my journey to now has inspired me to start this blog, and to do whatever I can, no matter how small my contribution may be, to promote mental health awareness. It’s something we need to acknowledge and talk about. It should be taken equally as seriously as physical health, as it destroys and takes lives too (it is in fact the biggest killer of men under 40). It affects 1 in 4 people in the UK, and as a result, we need to ensure that, the services we have to support those affected, receive the funding, resources, and support, needed, to enable them to provide an effective service.
Thank you so, so much, for visiting my blog and reading this entry. I hope you will continue to support me and help to promote mental health awareness.