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.
In my case the experience of schizophrenia has passed through a number of key phases very different to each other. This is not just a personal history, or how I have structured the various parts of my book by the same title, but crucially how I have perceived my own experience of Schizophrenia from beginning to end. What follows is a brief guide to the different phases I have identified and lived through.
When you get schizophrenia the first problem you are presented with are the symptoms themselves. These will be both new and strange, but above all frightening for both patient and family. Hearing voices and having delusions takes a long time to get used to and some people never adjust to the weirdness of it all, or for that matter the terrifying nature of the experience. What the symptoms will often mean is a process of social isolation which may include being cut off from friends and family. It often also means giving up work and in these respects life before will be very different to life after the onset of the illness. People often see this as the beginning of a huge change in their lives and again there must be a process of adjustment. Sooner or later it will become apparent that you need help. So the next stage is the diagnosis which immediately places a label – together with the associated stigma – upon you. This can be just as bewildering as the symptoms, and it can also take a long time to figure out exactly what the stigma is and how it arises etc.
I have written a lot on stigma for a variety of reasons. Under Care in the Community people with schizophrenia will be exposed to this in terms of social and employment discrimination. There is a need for explanation which simply lays bare the facts of this situation to both the patient and family. The other reason is more personal. Upon entering into the new world schizophrenia invariably seems to present you with, it seems that stigma is a major problem affecting many areas of your life including sometimes your mental health. With your life in such chaos there is a need to impose some kind of order on what is happening. An explanation of stigma and the theoretical goals of community care are both important ways of doing this. Where you stand in relation to society once you get a mental illness is very important in determining your life chances. To this end I have tried to explain both in everyday terms rather than using technical jargon. After diagnosis for many people comes hospital. This stage stands out in my memory, as in many cases such a stay can be lengthy (mine lasted for over a year which I considered to be a large chunk out of my life). Actually hospital was a natural transition to group living in Sheltered Accommodation.
After that comes care in the community and the necessary process of de-institutionalisation. This is facilitated by going to Sheltered workshops, day centres and educational courses. This can be a slow process and involves issues like rebuilding confidence and social skills just as much as practical ones. In my experience this has been one of the most enjoyable phases of the mental health system. It is an opportunity to pursue long wished for interests in the process of empowering people to live their own lives. I have found it is also very important to keep busy doing this sort of thing as a distraction from the illness.
If the illness hasn’t gone, the next phase which occurs is dealing with it in the long term. This presents its own challenges, and a process of coming to terms with the duration of that period in your life and what you have lost as a result of it. This requires courage to cope and perhaps a philosophical attitude that life does not always turn out the way we wanted it. Hopefully a further stage will be a sense of recovery from the illness and drawing up plans to get your life back on track, though not necessarily picking up where you left off. For me it became apparent that leaving Sheltered Accommodation is just as frightening as hospital. Looking ahead can redress this balance as you never know what your potential is and how good life could be afterwards.
The last and possibly subsequent phase is relapse which may follow the stage of perceived recovery. Sadly from the people I have met this is all too common and leads to my current phase: namely the prospect that the illness will never go away and coming to terms with that. This requires a lot of soul searching and maybe it is better not to think about it and just see what life has in store for you instead.
So there you have it: life with Schizophrenia is not just all the same and endless suffering. It is as varied and complex as most other things are in life. What I have tried to do is outline why and how and then leave it up to the reader to judge for themselves.