Life After Diagnosis
I will never forget the moment I was diagnosed with schizoaffective disorder, a combination of schizophrenia and depression.
It was Tuesday 18th December 2008. I had only returned to my parent’s home in North-West London the previous day from Manchester, where I was at university studying Drama at the time.
My parents were looking forward to spending the Christmas holidays with me.
Now I was sitting together with them in the office of a psychiatrist who was telling us that I was in the “midst of a psychosis.”
Suddenly, in just a matter of minutes, my entire world literally turned upside-down.
For I was being told that the voice of the devil I had been hearing, and the belief that I was on my own version of ‘The Truman Show’ for the past decade, were in fact, simply, “all in my head.”
It’s so hard to describe all the many emotions that overwhelmed me as the psychiatrist explained that I had to be admitted into a psychiatric unit, begin taking various medications, and undergo intensive therapy.
Mostly, I felt shame and guilt and anger toward myself. More than this, I believed I had just been handed a life sentence only weeks before I turned 21.
Schizophrenia was a term that I knew little of, other than what I watched or read about it in the media.
Not one of these I could recall was a positive story; in fact they were all very much on the contrary.
The next few years of my life were incredibly difficult. I felt like I was in limbo. I had lost my former identity, for it now seemed like I had been living a total lie, and I was struggling to find my place amongst my family and friends with an illness that I couldn’t discuss out of embarrassment.
I also struggled with the anti-psychotics and their side-effects, as well as becoming increasingly anxious; experiencing crippling panic attacks for the first time. I began planning a future as a recluse because I simply couldn’t cope with the world around me. It was moving forward, but I had reverted back to being a child, a very lost child, but this time there was no-one to comfort me and tell me it would all be ok.
By the age of 25, I was desperate find something to help find my way out of the abyss of hopelessness that had engulfed my early twenties. At this point things had been starting to improve marginally. After years of Cognitive Behavioural Therapy, my symptoms were more manageable. The constant cycle of paranoia and intrusive thoughts had less command over me than they used to.
I had also begun making vlogs on YouTube about my illness and it was therapeutic to be able to express myself to a community of fellow sufferers who understood what I was going through.
It was a course in mindfulness though which I undertook after a recommendation by my therapist, which proved to be a real turning point for me. The course was a five day retreat in Totnes, Devon, that introduced participants to the concept of mindfulness.
Mindfulness in its simplest terms is a way of paying attention to the present moment, using various techniques such as mediation, breathing and yoga.
My journey to the retreat was racked with fear: I was certain I was going to have a panic attack in front of everyone on the course and be sent home because I was unable to achieve a ‘mindful state’.
As I was soon to learn though, mindfulness is more than simply focusing on your breath in order to stay present. The pivotal moment in the retreat came when we were taught that mindfulness fundamentally is as much about awareness of ourselves, as acceptance of ourselves. I sat there and listened to the course leader talk about the principles of learning to stop judging and forgive ourselves whilst sobbing as quietly as possible to myself.
For up until that point I had spent the last five years incessantly punishing myself day after day for having schizophrenia.
Ironically, there was peace of mind in learning to accept the way in which it works. I can’t change its cognition and constant falling out of touch with reality. At times I am entirely convinced I am a reincarnation of singer Nina Simone. On other occasions, a voice will tell me repeatedly that someone I love is about to be killed in a car crash. Currently, I struggle to hold a drink without hearing “THROW IT ALL OVER SOMEONE, NOW, JONNY!” and seeing that image replayed out over and over in my mind.
The difference now though is that no matter how tough it can be to live in this mind of mine, I do not let it become me entirely. In fact, I am even beginning to think of it as ‘a beautiful mind,’ now that I know there really is life after diagnosis.