Writing about schizophrenia is important because friends and family, doctors and nurses need to know what their loved ones are going through. The doctors like to read accounts by patients. Finally, society at large has a need to know what people go through with the illness in order to understand it.
Everyone’s experience of schizophrenia is different, so the more accounts we have of people suffering from it the more we will begin to understand it. Looking on Amazon there are 730 memoirs, but the majority of the one in an hundred people with schizophrenia seemed to be silent.
There are many aspects of writing about schizophrenia but I have singled out two of the most important here: one is to explain the fearful symptoms, and the other is what to do about them. I hope in this article to give a few brief pointers, though it is not a comprehensive guide
What the problem with the symptoms are is that we get delusional thoughts and we hear voices. Like a voice that won’t shut up, you cannot get the delusional thoughts out of your head. You are stuck with it until the symptoms wear off and this can take hours and hours, days and weeks at a time.
As far as explaining it goes, the terrifying fear it inflicts from the paranoia is one common problem. Voices can be frightening too. There two ways of dealing with this: you can either confront it or distract yourself. This, needless to say, is easier said than done as fear can be overwhelming.
Courage can work depending on the severity of the fear, which can range from mild anxiety to absolute terror. It does not always seem to be the end of the world but it can be like that very often. The illness can put you into shock or can be so frightening that you cannot move.
Many people commit suicide rather than live with schizophrenia regardless of how brave they are. The courage needed to commit suicide is less than that needed to confront the symptoms, which again I think is a graphic example.
To explain, being delusional and frightened in my case was generated by the thought of being responsible for 9/11 and so that the CIA were after me and if they found me they were going to torture me to death and, as my psychologist pointed out, this would frighten anyone.
As far as what some social scientists call otherness goes, meaning schizophrenia cannot be understood unless you have had it yourself, this is not a true picture in my case and I think much of it can be explained.
If you imagine what happens with war criminals and how they have tortured people in history then you can begin to get some understanding of what I am afraid of and what I am going through. Imagine how frightening being tortured is.
I feel that way about what could happen to me if I was going to be punished, and that I have to hide away indoors in case anyone recognises me. The neighbours might be spying and the telephone may be tapped. I freeze when a police car drives past my house.
Like many war criminals I feel like I am on the run, the only difference is that when I am caught it will not be the Nuremberg trials I must deal with (that would be frightening enough), but with being tortured myself. That in a nutshell is what it is like.
The other symptom: hearing voices can be just as severe as having paranoid delusions; some people hear loud roaring noises like thunder or the voice of god and the devil. Again there is a range of severity from anxiety to terror.
Voices present another problem as they can cause serious damage to your self esteem by criticising, and again the answer is to try to confront them or distract yourself.
Distraction from voices is difficult and it has often been recommended to me to listen to a Walkman to do this, but I never managed to get this to work as I could still hear a voice.
As far as the damaged self esteem goes we need to remind ourselves we have good points and we are not such bad people after all. Friends and family can help with this by making the patient feel valued and loved. A good psychologist could help here too.
Again with voices there are levels of severity, and the emotional pain they inflict can cause suicide attempts. For me at my worst moments I try to remind myself that the hallucination will pass and things return to normal. I have to hang on in there but again this is not always possible as the whole thing seemed to feel like the end of the world.
Another coping strategy is alcohol consumption, and I have found I need something with a great kick and the answer here is wine more often than not. The problem here is that alcohol stops the antipsychotic tablets from working: the worse the symptoms get the more frightening, and there is a vicious circle here.
It is a major problem that doctors do not prescribe Valium enough for patients as in a lot of cases when it is severe enough to warrant it. The cure is worse than the disease here with the withdrawal symptoms to be sure, but in my case things were so severe I got them prescribed anyway.
It has been a great help to me that clozapine has such a powerful sedative effect, the most of any antipsychotic, and this means I can get to sleep each night even when I am frightened. Without them I would be going for days without sleep and then crashing out for a day.
It is unfortunate that my sleep on clozapine has never been restorative. It is not natural sleep and another problem here is, as I have outlined in one of my books, that I get recurring schizophrenia induced nightmares which again prevented me from benefiting from rest during the night.
The anxiety I experience never really leaves me either so the only time for rest and healing occurs when the symptoms wear off. At these times it is important to recuperate and enjoy the good times to lift one’s mood and reflect on the good things in life. Things are not all doom and gloom and like everybody you go through good times and bad.
The philosophy is only one aspect and it is also necessary to do therapeutic things like eat well and to treat yourself with buying something you want. I keep a wish list on my notice board which I can look at when I am going through an episode and know I will benefit from it when things return to normal.
Also during the good times emotional contact from my friends and family can be very soothing, and help deal with the bad times as well as make use of the good times. Family can be a source of strength through times of adversity, yet this is limited for many people who lose family through stigma.
My hope has always been that the antipsychotic drugs keep on advancing. The last major step forward was with the development of clozapine which treated previous incurable cases. If they can do it once then maybe it can happen again?
A non-addictive valium may also help here, but though there are herbal and homeopathic remedies available, if that was the answer schizophrenia may not be the major problem that it is.
Another thought about crisis episodes is that with a powerful sedative you can knock yourself out and go to sleep. This can be difficult since the sedative sleeps me fourteen hours a night anyway and my body cannot sleep anymore. If I am ill late at night this stands more of a chance of working, but because the schizophrenia gives you nightmares this might not be a way out.
In sum, and writing from society’s point of view especially about particularly severe symptoms, it is important in another way in that when the reader understands the suffering, it should generate much sympathy for the patient and most importantly compassion, and sharing the compassion can soothe the symptoms the patient is experiencing. Schizophrenia might be a lot more bearable
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.