Life After Diagnosis


Change In Mind

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.

Find out more about mindfulness and locate your nearest course here

For support and advice on mental health visit Mind and Rethink Mental Illness

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About alifeafterdiagnosis

I am a 28 year old award winning mental health campaigner with schizoaffective disorder, a combination of schizophrenia and depression.

3 responses to “Life After Diagnosis”

  1. abderrezak says :

    hello Johnny ,

    In my opinion schizophrenia is demon possessed

    it’s simple scan your self with this link : http://goo.gl/fyVGYo ( listen )and you see with your eyes unbelievable result ,

    or this : http://goo.gl/TASFRX to clean your soul ,It’s free, we lose nothing to try.

    if you accepted a challenge , found a child or a man who has the same disease put him this link to Listen and you will see an amazing and instant result

  2. Tracy says :

    Hi Johnathan,

    My name is Tracy. I am a new graduate nurse in Australia. I was looking through your channel whilst researching for my project and I’ve noticed you have experienced depression in your life. Firstly I love your videos, they are pretty amazing and I’m sure they help a lot of people.

    The reason I’m contacting you is that I am currently doing a project here in Australia that I’m quite passionate about. It’s basically about consumer perspectives on physical health and implementing daily physical health monitoring in mental health units e.g. Vital signs and Blood sugar levels. By gathering this information I would love to provide recommendations for nurses to collaboratively improve the physical health of clients. Basically I want consumers physical health to be as equally important as their mental health. In saying that have you ever been hospitalised? If not i think you can still be of some assistance. I would like your perspective on physical health. I have a few questions I’d like to ask if you are willing. Then if possible you can write the response back or you can send a video response through your channel or email so I can use as part of my presentation, with your permission of course.

    Sorry for the rambling but if you need more information, if you would like to see my project proposal I am more than happy to provide the details.

    Sincerely,

    Tracy

  3. Suzanne Alsop says :

    Hi Johnny,

    I am so inspired by you and all the good work you have done. You have helped me greatly on my journey of managing my illness and relating to someone with very similar experiences.

    I was aged 17 when I went to Germany on a 3 week stay with a family attending school to learn the language. By about the 3rd week I had become ill with psychosis. The family did not know what to do with me so I stayed one night in a children’s psychiatric hospital and then my brother came to collect me and take me home. Fortunately, I just got better on my own after this episode as I re-adjusted back home.

    Through the ages of 17-25 I experienced bouts of depression, anxiety and psychotic episodes and was on and off anti-depressants and the anti-psychotic drug sulpiride. I found that Every time I stopped taking sulpiride I would become ill again so the doctor suggested I stay on a small amount of just 200mg daily to keep me ticking over which is what happened between the ages 25-40 and gratefully I was well and could manage life.

    This was fine until now aged 40 my prolactin levels were at very high levels so it was suggested that I might like to try coming off the drug as I did not need it anymore as I had ”grown-up” and my body was rejecting it. So I came off sulpiride and after 6 months I knew I was not well. Yesterday, I asked to go back on the drug for life as I know this works for me. There may be better drugs on the market nowadays that I could take without the side effects but I am reluctant to try them as I know that sulpiride has worked fine for me the last 15 years apart from the side effects.

    I am currently getting better to go back to work in due course. In my case I think the main reason for my illness is that I have too much dopamine in my brain and I need an anti-psychotic to suppress this.

    Keep up the good work, you have done so much to help those like ourselves and others’ understanding.

    Much respect 🙂

    Suzanne Alsop

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