DUAL DIAGNOSIS RECOVERY FOR ALL
What is Schizophrenia and how common is it?
What is Schizophrenia?
‘Schizophrenia’ is a word that makes many people uneasy. The media regularly uses it – inaccurately and unfairly – to describe violence and disturbance.
It is one of several disorders called ‘psychoses’ – and this word is also used to describe violence and disturbance.
So, it’s hardly surprising that many people with this diagnosis find it unhelpful. It can feel as though society has judged you to be violent and out of control – when you clearly are not.
We still use the word ‘schizophrenia’ because a better one has not been agreed for the pattern of symptoms and behaviours described here.
Even if you don’t find the word helpful, we hope that the information in this leaflet can still be useful.
Many of the symptoms that are part of schizophrenia will also occur in other disorders – they tend to be called ‘psychotic’ symptoms.
Schizophrenia is a disorder of the mind that affects how you think, feel and behave. Its symptoms are described as ‘positive’ or ‘negative’.
Advice for People Newly Diagnosed with Schizophrenia:
What are the symptoms of schizophrenia?
Its symptoms are described as ‘positive’ or ‘negative’.
These are unusual experiences. Many people have them from time to time and they need not be a problem. In schizophrenia, they tend to be much more intense, troublesome, pre-occupying and distressing.
A hallucination happens when you hear, smell, feel or see something – but it isn’t caused by anything (or anybody) around you. The commonest one is hearing voices.
What do voices sound like?
They sound utterly real. They usually seem to be coming from outside you, although other people can’t hear them. You may hear them coming from different places, or they may seem to come from a particular place or thing.
Voices can talk to you directly or talk to each other about you – it can be like over-hearing a conversation. They can be pleasant, but are often rude, critical, abusive or just plain irritating.
How do people react to them?
You may try to ignore them, talk back to them – or even shout back at them if they are particularly loud or irritating. You may feel that you have to do what they tell you, even if you know you shouldn’t. You may wonder if they are they coming from hidden microphones, from loudspeakers, or the spirit world.
Where do they come from?
Voices are not imaginary – you really do hear them – but they are created by the mind. Scans have shown that the part of the brain that ‘lights up’ when you hear voices is the same area that is active when you talk, or form words in your mind.
The brain seems to mistake some of your thoughts, or ‘inner speech’, for voices coming from outside you.
Do other people hear voices?
You can also hear voices in severe depression. They tend to be simpler, repeating the same negative or critical word or phrase over and over again.
You can also hear voices which don’t interfere with your life. They may be pleasant, or not very loud, or only happen from time to time. These voices do not usually call for any kind of treatment.
Other kinds of hallucination
You may see things that aren’t there, or may smell or taste things that aren’t there. Some people have uncomfortable or painful feelings in their body, or feelings of being touched or hit.
A delusion happens when you believe something – and are completely sure of it – while other people think you have misunderstood what is happening.
It’s as though you see things in a completely different way from everyone else.
You have no doubts, but other people see your belief as mistaken, unrealistic or strange. If you do try to talk about your ideas with someone, your reasons don’t make sense to them, or you can’t explain – you ‘just know’.
It’s an idea, or set of ideas, that can’t be explained as part of your culture, background or religion.
How does it start?
- It may suddenly dawn on you that at last you really understand what is going on. This may follow weeks or months when you have felt that there has been something wrong, but that you couldn’t work out what it was.
- A delusional idea can be a way of explaining hallucinations. If you hear voices that talk about you, you may explain it to yourself with the idea that a government agency is tracking you.
These are ideas that make you feel persecuted or harassed. They may be:
- unusual – it feels as though MI5 or the government is spying on you. You may think that neighbours are influencing you with special powers or technology.
- everyday – you start to believe your partner is unfaithful. You do so because of odd details that seem to have nothing to do with sex or not being faithful. Other people can see nothing to suggest that this is true.
- upsetting – feeling persecuted is obviously upsetting for you. It can also be distressing for the people you see as your persecutors, especially if they are close to you, like your family.
Ideas of reference
You start to see special meanings in ordinary, day-to-day events.
It feels as though things are specially connected to you – that radio or TV programmes are about you, or that someone is telling you things in odd ways, for example, through the colours of cars passing in the street.
Coping with delusions
- Delusions may, or may not, affect the way you behave.
- It can be hard to talk to other people about them – you realise that they won’t understand.
- If you feel that other people are trying to harm or harass you, you will probably just keep to yourself. If you feel really threatened, you may want to hit back in some way.
- You may try to escape your feelings of persecution by moving from place to place. After a few days or weeks in a new place though, the feelings just come back.
Muddled thinking (or ‘thought disorder’)
You find it harder to concentrate – it’s more and more difficult to:
- finish an article in the newspaper or watch a TV programme to the end
- keep up with your studies at college
- keep your mind on your job at work.
Your thoughts wander. You drift from idea to idea – but there’s no clear connection between them.
After a minute or two you can’t remember what you were originally trying to think about. Some people describe their thoughts as being ‘misty’ or ‘hazy’ when this is happening.
When your thoughts are disconnected in this way, it can be hard for other people to understand you.
Feelings of being controlled
You can also feel that:
- your thoughts have suddenly disappeared – as though someone has taken them out of your mind;
- your thoughts feel as though they are not yours – it’s as though someone else has put them into your mind;
- your body is being taken over, or that you are being controlled like a puppet or a robot.
Some people explain these experiences by thinking it’s the radio, television or laser beams, or that a device has been implanted in them. Other people blame witchcraft, angry spirits, God or the Devil.
- You start to lose your normal thoughts, feelings and motivations.
- You lose interest in life. Your energy, emotions and ‘get-up-and-go’ just drain away. It’s hard to feel excited or enthusiastic about anything.
- You can’t concentrate.
- You don’t bother to get up or go out of the house.
- You stop washing or tidying, or keeping your clothes clean.
- You feel uncomfortable with people.
People can find it hard to understand that negative symptoms are really symptoms – not just laziness.
This can make it difficult for both you and your family. Your family feel that you just need to pull yourself together.
You can’t explain that … you just can’t. Negative symptoms are less dramatic than positive symptoms, but can be really hard to live with.
What treatments are available for schizophrenia?
This can help the most disturbing symptoms of the illness – but it is not the whole answer.
It is usually an important step which can make other kinds of help possible. Other important parts of recovery are support from families and friends, psychological treatments and services such as supported housing, day care and employment schemes.
Medication reduces the effects of the symptoms on your life. Medication should:
- weaken delusions and hallucinations gradually, over a period of a few weeks;
- help your thoughts to be clearer;
- increase your motivation and ability to look after yourself – although too much medication (or the wrong medication for you) can have the opposite effect.
How is it taken?
- As tablets, capsules, or syrup. It’s hard for anybody to remember to take tablets several times a day, so there are now some that you only need to take once a day.
- If you find it hard to take tablets every day, you may find it easier to take antipsychotic medication as an injection every 2, 3 or 4 weeks. These are called depot injections and are given by a nurse.
How well does medication work?
- About 4 in 5 people get help from them. They control the symptoms, but do not get rid of them. You have to go on taking the medication to stop the symptoms from coming back.
- Even if the medication helps, the symptoms may come back. This is much less likely to happen if you carry on taking medication, even when you feel well.
How long will I have to take medication for?
- Most psychiatrists will suggest that you take medication for a long time.
- If you want to reduce or stop your medication, discuss this with your doctor.
- Reduce your medication gradually. If you do this, you can notice any symptoms returning before you become really unwell again.
What happens when I stop taking medication?
The symptoms will usually come back – not immediately, but usually within 3 – 6 months. You can find more information about antipsychotic medication on our website.
Getting back to normal
Schizophrenia can make everyday life hard to deal with. This may or may not be due to the symptoms. Sometimes you may just get out of the habit of doing things for yourself. It can be difficult to get back to doing ordinary things like washing, answering the door, shopping, making a phone call or chatting with a friend.
Cognitive Behavioural Therapy (CBT)
This can be done by clinical psychologists, psychiatrists or nurse therapists. It helps you to:
- concentrate on the problems that you find most difficult. These could be thoughts, hallucinations or feelings that you are being persecuted.
- look at how you tend to think about them – your ‘thinking habits’.
- look at how you react to them – your ‘behaving habits’.
- look at how your thinking or behaving habits affect you.
- work out if any of these thinking or behaving habits are unrealistic or unhelpful.
- work out more helpful ways of thinking about these things or reacting to them.
- try out new ways of thinking and behaving.
- see if these work. If they do, to help you use them regularly. If they don’t, to find better ones that do work for you.
This kind of therapy can help you to feel better about yourself and to learn new ways of solving problems. We now know that CBT can also help you to control troublesome hallucinations or delusional ideas.
Most people have between 8 and 20 sessions, each lasting about 1 hour. To help the symptoms of schizophrenia, you may need to carry on with ‘booster’ courses from time to time.
Counselling and supportive psychotherapy
These can help you to:
- get things off your chest
- talk things over in more depth
- get some help with the daily problems of life.
These try to help you and your family cope better with the situation.
They can be used to discuss information about schizophrenia, how best to support someone with schizophrenia and how to solve the practical problems that can crop up. Meetings are held over a period of about 6 months.
Support from the Community Mental Health Team (CMHT) or Early Intervention Team
- A mental health worker from your local team (your care coordinator) should see you regularly. Community psychiatric nurses can give you time to talk and can help sort out problems with medication.
- Occupational therapists can:
- help you to be clear what your skills are and what you can do
- show you how to improve things you aren’t doing so well
- work out ways of helping you to do more for yourself
- help you to improve your social skills (how to get on with other people).
- There may be help for families, with regular meetings for a while. These can help the family to:
- learn more about the illness and treatment
- sort out some of the practical problems of day-to-day living.
- The psychiatrist will usually organise your medication and take responsibility for your overall care.
- The care coordinator is responsible for making sure that you get the care you need.
- Vocational rehabilitation or recovery workers can help you to get back into work, education or some sort of activity that you find rewarding.
Managing your medication
- Apart from clozapine, antipsychotic medications seem to work as well as each other. Which antipsychotics you start with will need to be discussed fully with your doctor, taking into account their possible side-effects.
- It is also not possible to predict whether one antipsychotic will work better for you than another. You may need to try one antipsychotic and see how you get on with it. If it doesn’t help you, or if the side-effects are a problem, your psychiatrist will help you to find one that suits you.
- Clozapine does seem to work better than other antipsychotics for some people. However, its side-effects can be dangerous, so it can only be prescribed by a specialist after other treatments have failed. If you have had both a ‘typical’ antipsychotic and an ‘atypical’ antipsychotic for 8 weeks without real help from either, clozapine may be worth trying.
- Your medication should be reviewed by your psychiatrist at least once a year.
- CBT seems to be helpful in people who are taking medication. We don’t know how well it works if someone is not taking medication. It is recommended in very early schizophrenia, or if you are likely to develop a psychosis.
- If you want further information about treatments, see the NICE guidelines (listed below).
- If you are unhappy with your treatment, you can ask for a second opinion from another psychiatrist.
Myths about schizophrenia:
Isn’t schizophrenia a split personality?
No. Too many people have the idea that someone with schizophrenia can appear perfectly normal at one moment, and change into a different person the next. This is not true.
People can misuse the word ‘schizophrenia’ in two different ways to mean:
- Having mixed or contradictory feelings about something. This is just part of human nature – a much better word is ‘ambivalent’.
- That someone behaves in very different ways at different times. Again, this is just part of human nature.
Doesn’t schizophrenia make people dangerous?
Usually not. Any violence is usually sparked off by street drugs or alcohol – not unlike people who don’t suffer from schizophrenia.
There is a higher risk of violent behaviour if you have schizophrenia, but it is very small compared to the effects of drugs and alcohol. People with schizophrenia are far more likely to be harmed by other people than other people are to be harmed by them.
Schizophrenia never gets better
1 in 4-5 people with schizophrenia recover completely. 3 out of 5 people with schizophrenia will be helped or get better with treatment.
If there is an inaccurate or abusive item about schizophrenia in the press, a radio talk show or on TV. don’t get depressed, get active. Write a letter, email them, phone them and tell them where they are wrong. It does work.
What Living Well With Schizophrenia Means To Me:
Schizophrenia, Addiction, and Me:
Accepting Your Loved One's Mental Illness:
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