Fact Sheet 10 - Schizophrenia
- you have a diagnosis of schizophrenia
- you think you might have schizophrenia
- you know someone with this diagnosis
- you just want to know more about schizophrenia
- what it is like to have schizophrenia
- what causes it
- what can help
- how to help yourself
- information for relatives
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 behaviors 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.
What is schizophrenia?
A disorder of the mind that affects how you think, feel and behave. 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 secret agents or the government is spying on you. You may think that neighbors 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
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.
- 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.
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. Other aspects include:
- 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.
- If you have schizophrenia for the first time, there is a roughly 50-50 chance that you will feel depressed, often before you 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.
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.
Although only 1 in 100 people get schizophrenia, about 1 in 10 people with schizophrenia have a parent with the illness.
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 makeup)||1 in 2|
|1 non-identical twin (different genetic makeup)||1 in 8|
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.
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 symptoms, but this can make things worse.
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.
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.
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.
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 the person has used drugs or alcohol.
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 as time goes on?
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.
You may not need to come into hospital, but you will need to see a psychiatrist.
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.
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 Behavioral 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.
Counseling 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.
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 are unhappy with your treatment, you can ask for a second opinion from another psychiatrist.
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 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.
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);
- using street drugs or alcohol);
- getting anxious about bills, but not asking for help or advice;
- Disagreements with family, friends or neighbors.
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 neighbors).
- remind yourself that your voices can’t harm you
- 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).
Agree with someone you trust that they can 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.
Your physical health
Look after your body. People with schizophrenia have poorer health than other people. It's not clear why. It may be something to do with eating badly, getting less exercise and smoking more than other people. It may be made worse by some of the medications that are prescribed for psychosis.
Whatever the causes, if you have schizophrenia, it makes sense to take care of your physical health. Both your doctor and your psychiatrist need to help you do this. They should
- Help you to eat better and keep active.
- Regularly monitor your weight and how your heart is working.
- Help you to cut down or stop smoking. This could be Nicotine replacement - gum, patches or inhalers. There are also some medications that can help.
- Offer you help if you:
- Have problems with the amount of sugar in your blood.
- Put on too much weight.
- Have high lipid levels in your blood.
- You can:
- 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.
- Avoid street drugs.
For family members
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.
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.
In a teenager, you may wonder if this behavior 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.
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 psychiatrist?
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 needs 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.
You may also need advice. What do you need to do? Schizophrenia makes people more sensitive to stress, so it is helpful to avoid arguments and keep calm - perhaps easier said than done!
Career assessment and support plan
Families deserve the help and information they need, and mental health teams need to listen to their worries and concerns. The mental health team should offer to assess a carer's needs so they can make a plan for supporting the carer. A carer also has the right to a carer's assessment from local social services.
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!