By Mark Ellerby
The story of my illness of schizophrenia recounts from my journey of being trapped in my room for two years and how with well thought out help I managed to get back to more normal functioning.
During my delusional phases I often had dreamt about it during the night, and when I woke up I was frozen in fear. My metabolism was racing round at a hundred miles per hour while I could not move.
The effect was exacerbated by adrenalin and tensing up, but I was so frightened that I was in physical pain with it. Suffering from anxiety is the key phrase here. It is not so much a mental state as a physical one.
Even obvious coping strategies like getting to a chair and sipping some water were not available to me because that assumes you can get to the chair in the first place.
Being in the small group of people for whom benzodiazepines are not effective meant that I was subject to the full force of the mental illness, and interestingly my psychiatrist described my symptoms as particularly severe. The lesson here is I think that even difficult symptoms can be overcome.
Locked in my room I began to hear voices talking about 9/11. The confinement concentrated my mind on the delusions and amplified the effect of hearing and listening to voices.
The reason I did not dare go out was because I felt other people could read my mind and notice that I was thinking I was responsible for 9/11.
Help was clearly needed but I walked a razors edge between having the need to get out of my room and being subject to so much stress in doing this that I might snap.
After a lot of pressure from the mental health professionals assigned to me in the UK I agreed to try it. I had to argue that the whole experience of doing this was something akin to Bungie jumping and how they would feel if asked to do this themselves?
I had to take a risk with the illness otherwise the confinement would never end.
Then I had a brain wave. Some places I went to were not as frightening as others and so I made a list from easiest locations to the most difficult.
I had to start at the beginning which was travelling on buses. Being in such close proximity to the other passengers and unable to get out of the confinement of the bus until the end of the journey. A simple fifteen minute journey seemed to take about an hour and a half.
A support worker was put in place to come with me and to try to reassure me that I was safe going out. The first thing here is that I had to trust the person before I would accept the reassurance. I think that it is possible to get paranoid about the professional help I was given, so I had to get to know the support worker very well to ensure this did not happen.
Then came the first day I had to leave my room. I was so overwhelmed that the situation of doing this at first went over my head. After a while I began to psyche myself up.
This was true for getting out of the mental health project I live in but also for getting out of the support worker’s car at the other end. I knew if I was going to have a mental breakdown I could avoid this by getting back to the vehicle which to me represented safety and defended space.
Again I had to think carefully about what I was doing. Going to the shopping Mall I found was easier than some of the other things on my list of difficult situations. It is easier to get lost in a crowd and remain fairly anonymous.
This was in contrast to going along a walk way where people would put me on the spot by saying hello. This made me feel suddenly visible and I felt I was being recognised and it would bring back the thoughts of being responsible for 9/11.
One shop I went into was full of television sets, and – as many readers of this article with first hand experience of schizophrenia will know – a common symptom of the illness is where they think they are being talked about on TV, so being exposed to this was quite frightening.
In the television shop it was like having a crowd of people shouting at you at once. I began to associate the TV shop with fear, not to mention a number of other places where I felt people were noticing me.
Eventually it got to the point that the mere idea forming in my mind about going to these places, without actually going back there, became a mental obstacle in respect of going out.
At this point another strategy was put in place. I got a video about 9/11 in my safe environment at home and in the company of the support worker. She was able to be with my when I was delusional, and if it all became too much all I had to do was turn the television. At this point I began to go out again.
The practice, however, did not involve just coping with a frightening situation but also by trying to bring some kind of distraction when getting out and about as well. Often I could try to browse round the shops or talk to my support worker, immersing myself into the conversation as much as I could.
I believe that the two main ways of dealing with the fear of schizophrenia are a mixture of exposure and distraction, but there are times when neither work and you simply have to go home or back to your care.
Other coping mechanisms which were useful to a lesser extent were aromatherapy oils, breathing into a paper back, and safe place imagery, but I don’t think these are necessarily as effective as confronting things head on.
The end of this story is the hope that with the right help even severe schizophrenic symptoms might be lived with, where they cannot be overcome, and not to give up as practising confronting and distracting can, as in my case, take years before you get a result.
In my case the whole gradual process of exposure took about seven years and things have improved to the point of going out if someone comes with me.
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Mark Ellerby has lived with a diagnosis of schizophrenia for 16 years. In order to help others understand the condition, demystify, and educate, he has published four books that explain his own experiences of schizophrenia and its differing stages. They are also aimed at aiding recovery and self help. Please see Mark’s website for more information and to purchase his books.