Schizophrenia – A Guide

A disorder of the mind and a mental illness, schizophrenia affects how you think, feel and behave. Schizophrenia is a disease that typically begins in early adulthood.

Schizophrenia in society

The disease typically begins in early adulthood; between the ages of 15 and 25. Men tend to get develop schizophrenia slightly earlier than women; whereas most males become ill between 16 and 25 years old, most females develop symptoms several years later, and the incidence in women is noticeably higher in women after age 30. The average age of onset is 18 in men and 25 in women. The onset is quite rare for people under 10 years of age, or over 40 years of age.

What is schizophrenia?

A disorder of the mind which affects how you think, feel and behave. Its symptoms are often described as either ‘positive’ or ‘negative’.

‘Positive’ symptoms

These are unusual experiences which are common in schizophrenia, but can also happen in other mental disorders.

Hallucinations

A hallucination happens when you hear, smell, feel or see something – but there isn’t anything (or anybody) there to cause it. 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 object. 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 is active when you hear voices is the part that is active when you talk, or form words in your mind. The brain seems to mistake your own thoughts, or ‘inner speech’, for voices coming from outside you.

Do other people hear voices?

In severe depression, you can hear voices but they tend to be simpler and repeat the same negative or critical word or phrase over and over again. You may 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.

Delusions

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 with the idea that a government agency is tracking you.

‘Paranoid’ delusions

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.

Making strange connections (‘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 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.

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 feel that:

• your thoughts suddenly disappear –
  as though someone is taking 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.

‘Negative’ symptoms

• 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 still be hard to live with.

Does everyone with schizophrenia have all these symptoms?

No. You can hear voices and have negative symptoms, but may not have delusional ideas. Some people with delusional ideas seem to have very few negative symptoms. If you only have thought disorder and negative symptoms, they may not be recognised for years.

Loss of ‘insight’

It feels as though everyone else is wrong, that they just can’t understand the things that you can. You feel that the problem is with the rest of the world, not with you.

Depression

• Around half the people with schizophrenia for the first time will feel depressed, often before they get more obvious symptoms.
• Around 1 in 7 people with continuing symptoms will become depressed. This can be mistaken for negative symptoms.
• Antipsychotic medication has been blamed – but research suggests that it actually helps depression in schizophrenia.
• If you have schizophrenia and feel depressed, make sure that you tell someone and that they take you seriously.

How common is schizophrenia

It affects around 1 in every 100 people over the course of their life.

Who gets it?

It affects men and women equally and seems to be more common in city areas and in some ethnic minority groups. It is rare before the age of 15, but can start at any time after this, most often between the ages of 15 to 35.

What causes schizophrenia

We don’t yet know for sure. It is probably a combination of several different things, which will be different for different people.

Genes

Although only 1 in 100 people get schizophrenia, about 1 in 10 people with schizophrenia have a parent with the illness.

Twins: an identical twin has exactly the same genetic make-up as his or her brother or sister, down to the smallest piece of DNA. If one identical twin has schizophrenia, their twin has about a 50:50 chance of having it too.

Non-identical twins have a different genetic make-up to each other. If one of them has schizophrenia, the risk to the other twin is just slightly more than for any other brother or sister. These findings are much the same even if twins are adopted and brought up in different families.

Relatives with schizophrenia

Chance of developing schizophrenia

None: 1 in 100

1 parent:1 in 10

1 identical twin (same genetic make up): 1 in 2

1 non-identical twin (different genetic make up): 1 in 80

Brain damage

Brain scans show that there are differences in the brains of some people with schizophrenia – but not in others. Where this is the case, it may be that parts of the brain have not grown normally because of:

• a problem during birth that stops the baby’s brain from getting enough oxygen
• a virus infection during the early months of pregnancy.

Street drugs and alcohol

Sometimes, street drugs seem to bring on schizophrenia.

Amphetamines:

Can give you psychotic symptoms, but they usually stop when you stop taking the amphetamines. We don’t yet know whether these drugs, on their own, can trigger off a long-term illness, but they may do if you are vulnerable. Some people start using drugs or alcohol to cope with their symptoms, but this can make things worse.

Cannabis:

• The heavy use of cannabis seems to double the risk of developing schizophrenia. New research has shown that the stronger forms of cannabis, such as skunk, may increase this risk.
• It’s more likely if you start using cannabis in your early teens.
• If you have smoked it frequently (more than 50 times) during your teens, the effect is even stronger – you are 6 times more likely to develop schizophrenia.

Stress

Difficulties often seem to happen shortly before symptoms get worse. This may be a sudden event like a car accident, bereavement or moving home. It can be an everyday problem, such as difficulty with work or studies. Long-term stress, such as family tensions, can also make it worse.

Family problems

At one time people thought that communication problems in the family could cause schizophrenia. This doesn’t seem to be the case. However, if you have schizophrenia, family tensions can certainly make it worse.

A difficult childhood

As with other mental disorders, schizophrenia is more likely if you were deprived or physically or sexually abused as a child.

What about violence in schizophrenia

A few people with schizophrenia do become violent – they usually hurt themselves but sometimes hurt other people. This can be caused by feelings of persecution or voices telling them to do it – often a combination of the two. It is much more likely if drugs or alcohol are involved.

Outlook

Many people with schizophrenia now never have to go into hospital and are able to settle down, work and have lasting relationships.

For every 5 people with schizophrenia:

• 1 will get better within five years of their first obvious symptoms.
• 3 will get better, but will have times when they get worse again.
• 1 will have troublesome symptoms for long periods of time.

What will happen without treatment

If you just hear voices, don’t mind them and they don’t interfere with your life, you probably may not need any special help. However, if the voices become too loud or unpleasant (or if other symptoms develop), then you should talk it over with a doctor.

Suicide is more common in schizophrenia – particularly if someone has symptoms, has become depressed, is not getting treatment or is getting less help than they used to.

The evidence is beginning to suggest that if schizophrenia is treated early:

• you are less likely to have to come into hospital
• you are less likely to need intensive support at home
• if you do come into hospital, you will spend less time there
• you are more likely to be able to work and live independently.

Treatments

If you have the symptoms of schizophrenia for the first time, you should start medication as soon as possible.

You may not need to come into hospital, but you will need to see a psychiatrist and a community mental health team. They will usually be able to plan your treatment with you at home. Even if you do have to come into hospital, it will only be until you are well enough to manage at home.

Medication

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 treatment and services such as supported housing, day care and employment schemes.

Why take medication?

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.

Psychological (or talking) treatments

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.

Family meetings

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. Around ten meetings happen 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 a family to learn more about the illness and treatment and can help them to 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.

How treatments compare

• Apart from clozapine, there seem to be few differences in the effectiveness of any of the antipsychotics. Which antipsychotics you start with will need to be discussedf fully with your doctor, taking into account their possible side-effects.
• It is also not possible to say in advance 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, discuss trying another with your psychiatrist.
• 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.
• CBT seems to be helpful in people who are taking medication, but we don’t know how well it works if someone is not taking medication. It may be particularly helpful in very early schizophrenia.
• 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.

Social help

Day centres

You may not be working, or may be unable to go back to work. Even so, it’s good to get out and do something every day.

Many people go regularly to a day hospital, day centre, or community mental health centre. These have a number of things you can do – keep fit, creative pursuits like painting and pottery, education or getting back to work activities. You can get active again and spend some time with other people.

These facilities don’t exist in some areas where there is, perhaps, more emphasis on helping people to be included in ‘mainstream’ activities for everybody, whether or not they have had psychological difficulties.

Work projects

These can help you develop your skills for work. They will often have contacts with local employers and can support you when you go back to work.

If you are unwell for a long time, you may need a specialist rehabilitation service.

Art therapies

These use art activities to help people to:

• find different ways of being with other people
• express and understand feelings they may not have been able to put into words
• to have the satisfaction of creating something.

These activities are usually done in groups.

Supported accommodation

This could be a bedsit or flat where there is someone around to help you with day-to-day problems.

CPA – Care Programme Approach (England & Wales only)

This is a way of making sure that people with schizophrenia get appropriate care and support. It involves:

• a care coordinator who is responsible for organising all the different parts of your care and treatment.
• regular meetings every 3 – 6 months. These involve you, your care coordinator, your psychiatrist and any other people who are giving you care or support. This can include your family or carers.
• a care plan that is checked at the regular CPA meetings. It is re-written each time and you will have a copy to approve or change.
• plans are made with you at these meetings about what to do if you find yourself becoming unwell again, or run into difficulties.
• carers can have an assessment of their needs every year.

Self-help

Learn to recognise early signs that you are getting unwell, such as:

• everyday things like going off your food, feeling anxious or not sleeping.
• other people may notice that you stop bothering to change your clothes, clean your flat or cook for yourself.
• mild symptoms – you feel a bit suspicious or fearful or start to worry about people’s motives. You may start to hear voices quietly or occasionally, or find it difficult to concentrate.

Try to avoid things that make you worse, such as:

• stressful situations such as spending too much time with people (although being with people can be helpful – see below).
• using street drugs or alcohol.
• getting anxious about bills, but not asking for help or advice (see our leaflet on debt and mental health).
• disagreements with family, friends or neighbours.

Learn relaxation techniques.

Make sure you regularly do something you enjoy.

Find ways of controlling your voices:

• spend time with other people
• keep busy
• listen to a personal stereo (TV and radio also work but may annoy your family or neighbours).
• remind yourself that your voices can’t harm you
• remind yourself that your voices don’t have any power over you and can’t force you to do anything you don’t want to

Join a self-help group for people with similar experiences to yours (see below).

Get someone you trust to tell you if you are becoming unwell again.

Learn about schizophrenia and your medication:

• talk it over with your nurse, mental health worker, psychiatrist – or someone else with schizophrenia.
• ask for written information about your diagnosis and treatment.
• if your medication is not working well, ask about other medications.

Look after your body:

• try to eat a balanced diet, with lots of fresh vegetables and fruit.
• try not to smoke – cigarettes harm your lungs, your heart, your circulation and your stomach.
• take some regular exercise, even if it’s only 20 minutes out walking every day. Regular vigorous exercise (double your pulse rate for 20 minutes 3 times a week) can help improve your mood.

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, e-mail them, phone them up and tell them where they are wrong. It works!

For families

It can be hard to understand what is happening if your son or daughter, husband or wife, brother or sister develops schizophrenia. Sometimes, no-one realises what is wrong.

What do you see?

Your relative may become odd, distant or just different from how they used to be. They may avoid contact with people and become less active. If they have delusional ideas, they may talk about them but may also keep quiet about them. If they are hearing voices, they may suddenly look away from you as if they are listening to something else. When you speak to them, they may say little, or be difficult to understand. Their sleep pattern may change so that they stay up all night and sleep during the day.

You may wonder if this behaviour is just rebellious. It can happen so slowly that only when you look back can you see when it started. It can be particularly difficult to recognise these changes during the teenage years, when young people are changing so much anyway.

Was it my fault?

You may start to blame yourself and wonder ‘Was it my fault?’ You may wonder if anyone else in the family is going to be affected, what the future holds or how they can get the best help.

Can I talk to the mental health team?

Families have often been left out of discussions because of worries about confidentiality. This should not be the case now. People with schizophrenia are often living with or being supported by their family. So, their family should have the information that will allow them to care most effectively. Even if the person does not want their family to be involved, the family can still tell the mental health team about what is going on.

Families deserve the help and information they need, and mental health teams need to listen to their worries and concerns.

Some myths

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?

People who suffer from schizophrenia are not often dangerous. Any violent behaviour is usually sparked off by street drugs or alcohol. This is similar to the situation with people who don’t suffer from schizophrenia.

Although there is a higher risk of violent behaviour if you have schizophrenia, it is very small compared to the effects of drugs and alcohol in our society. 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, another 3 out of 5 people with schizophrenia will be helped or get better with treatment.

Further help

Rethink

Advice line: 0845 456 0455 or email: advice@rethink.org

National voluntary organisation that helps people with any severe mental illness, their families and carers.

Mind

Mindinfoline: 0845 766 0163; email: info@mind.org.uk

Publishes a wide range of literature on all aspects of mental health.

Saneline

Helpline: 0845 767 8000 (1pm to 11pm every day of the year).

A national mental health helpline offering emotional support and practical information for people with mental illness, families, carers and professionals.

Shine: supporting people with mental ill health (Ireland)