well with schizophrenia

LIVE

A guide to living with schizophrenia

About this booklet

You’ve been given this booklet

because you’ve just been told you have

schizophrenia. This booklet will answer

some common questions you may have

about your diagnosis, tackle some of

the myths, and provide practical advice

on things you can do to help recover.

Facts about your illness

Facts about your illness

What is schizophrenia?

You’ve just has been diagnosed with schizophrenia. Schizophrenia affects how you think, feel and act and is a result of altered brain chemicals.

The word ‘schizophrenia’ tends to make people feel uneasy because it often triggers inaccurate images of violence and disturbed behaviours. But the word is not a judgement or life-sentence, it’s a medical term for the symptoms and behaviours you’ve been experiencing.

It’s part of a group of brain conditions called psychoses. When someone experiences psychosis they might see or hear things that other people can’t (hallucinations). Maybe they believe things that are very odd or not true (delusions). Also, they might think and behave in a confused or disorganised way.

Who gets schizophrenia?

Anyone can experience psychosis. Here in Australia, about 1 in 100 people experience the symptoms of schizophrenia at some stage in their lives.

Most people start to show symptoms in their late teens and early twenties.

What causes schizophrenia?

No one knows for sure, and no one understands why some people develop it and others don’t. It’s most likely due to a complicated mix of genes and environmental factors that vary from person to person.

The end result is an imbalance of brain chemicals that cause altered thoughts, feelings and behaviours.

What are the symptoms of schizophrenia?

Schizophrenia appears to come and go in cycles, worsening in periods known as relapse or a psychotic episode, but improving or disappearing completely during recovery.

It’s important to realise that schizophrenia affects everyone differently.

Some people have many symptoms, while others have only a few.

Positive Symptoms are ‘extra’ feelings or behaviours that aren’t usually present such as delusions or hallucinations. They can be intense, troublesome, and distressing.

• Delusions are beliefs or ideas that aren’t true. People may feel harassed or spied on, believe they have special powers, or they might believe they are being relayed secret messages from everyday objects

• Hallucinations are false sensations; tastes, smells, sightings etc. that others don’t experience. The most common hallucinations are hearing imaginary voices

Negative Symptoms are a reduced ability to act and feel normally. For example, losing interest in everyday activities, feeling out of touch with people, lack of feelings and emotions, or having less ability to experience pleasure.

Maybe you feel unmotivated, antisocial, or show no emotions at all.

People with schizophrenia also have problems with mood and may experience irritability, suicidal thoughts, depression, or elevated mood.

Disorganised Symptoms include confused thinking, and difficulty in planning, making decisions and interpreting others’ emotions and motivations.

People with schizophrenia experience three main groups of symptoms.

How is schizophrenia treated?There is no cure for schizophrenia, but there are many treatments to help you recover and cope with day-to-day life. Treatment involves ALL of these: medication, psychological treatment (talking therapies), psychosocial treatment, and community support.

The sooner help is provided for schizophrenia, the better the chances for treatment to be effective.

Your treatment plan and psychological support

Your mental health team will work with you to create your treatment plan. This looks at ways for you to work towards personal goals - things to look forward to when you feel better, such as seeing friends and family, returning to work, going back to study, or exercising regularly.

Forming a good relationship with your mental health team will help you learn about your illness, develop skills to minimise stress and other triggers, and learn to manage your symptoms.

Medication is essential for treating schizophrenia.

The main types of medicines are called antipsychotics and they target the imbalance of brain chemicals. Medication will restore normal brain function, not alter it. If you have any questions, ask your psychiatrist, GP or pharmacist.

Medication can be given in daily pill or syrup form, as dissolving wafers, or as a fortnightly or monthly injection. A once-monthly injection is useful because it’s one less thing for you to remember to do daily.

You may experience side effects when taking antipsychotics. It’s very important to mention any unusual or worrying side effects you experience to your doctor. Side effects may include: muscle spasms, muscle tremors, slowness in movement, dizziness, tiredness or weight gain. These can be treated.

If you experience anything which you think might be a side effect, tell your doctor or case manager as soon as possible.

If you are unhappy with your medication, provide your psychiatrist with as much information as possible about your symptoms and other problems you’re having. You have a right to expect the best treatment possible.

It’s important to take all medications as prescribed. Forgetting even a few pills a week can increase your risk of another psychotic event or relapse.

Stress can lead to relapse and feeling isolated and lonely will slow your recovery. Group activities organised by clinicians or in local community groups can counteract these problems. Join a group. Get involved!

Who is on your team?Talking to your mental health team

Besides your psychiatrist, your mental health team will consist of some of the following people: GP, case manager, nurse, psychologist, social worker, and occupational therapist.

It’s a good idea to go to appointments prepared, so write down questions in advance and take a pen and paper to write down the answers given to you.

Building your community support team

Telling friends, family and other appropriate people about your schizophrenia is vital to your successful recovery. But you only need to tell the people who can help you with your recovery.

Be prepared for a range of reactions to your news, it will vary according to their personality and their knowledge of the condition. Be ready to recommend a credible website they can visit to learn more about schizophrenia.

“I have a condition where I sometimes experience thoughts, emotions and behaviours that you may consider unusual.”

Keep your explanations simple. Some examples of statements to use are:

How your support team can help

• Watch for worsening symptoms that might indicate the start of a relapse

• Go to doctor visits with you for support

• Keep in contact with doctors, case workers and other friends and family to strengthen your support circle

• Help you maintain a daily routine at home, work or socially

• Make sure you are taking your medication

Take care of yourselfBe aware of your changing symptoms

Together with your healthcare team, develop a plan to monitor for early signs of relapse. Keep a close eye on changes in your body and your thoughts. Ask close friends or family to help and tell them if you notice any of these.

Look out for these signs you might be getting unwell:

• Everyday things like going off your food, feeling anxious or not sleeping

• Other people may notice that you stop bothering to change your clothes or clean your home

• 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

Keep healthy

It’s really important to keep your body and mind healthy. Here are some tips:

• Eat healthy food especially vegetables and fruit

• Get regular exercise - it improves mood and feelings of wellbeing

• Avoid all illicit drugs - they have a strong negative impact on recovery

• Try not to smoke - not only is it bad for your lungs, it acts on your liver and may mean you’ll need higher doses of medication

• Minimise alcohol and caffeine as much as possible

• Develop good sleeping habits

• Learn and use stress management techniques

• Avoid stressful situations such as having disagreements with people

• Find a support group where you feel comfortable talking about how you feel – in person and/or online

• Don’t be afraid to ask for help – sooner rather than later

Thinking about suicide does not mean you are a bad person, or weak, or flawed. It means that you feel like you are struggling to cope right now.

If you feel suicidal at all - tell someone how you feel. Ask that person to stay with you until you get professional help, even if you’re speaking to them over the phone.

• Contact a medical professional and tell them it is an emergency - call your doctor, psychiatrist, psychologist, counsellor or case worker

• Go to your GP or hospital emergency room. Wait there until you see a doctor

• Dial 000 - the police or ambulance will be able to take you to hospital

You can also call Lifeline: 13 11 14 or The Suicide Callback Service: 1300 659 467 or Kids Helpline: 1800 55 1800

What to do in a crisis

Dispel the mythsThere are many misconceptions and stigmas surrounding schizophrenia.

Myth:People with schizophrenia are violent.

Fact:People receiving treatment for schizophrenia are no more violent than the rest of the population. They are more likely to be victims of violence due to the misconceptions surrounding the condition.

Myth: Schizophrenia is a split personality disorder.

Fact: People with schizophrenia have only one personality. Schizophrenia is an illness that affects the normal functioning of the brain, interfering with a person’s ability to think, feel and act.

Myth:People with schizophrenia never recover.

Fact:Although there isn’t a cure for schizophrenia, there are effective treatments. With medications, therapy, and support from friends and family you can lead a productive and independent life.

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

Expand your knowledgeIf you or someone you know would like to learn more about schizophrenia, some sources of information are listed below.

Carers Australiawww.carersaustralia.com.au

Headspacewww.headspace.org.au

Reach Outwww.reachout.com.au

Sane Australia1800 187 263 www.sane.org

Mental Illness Fellowship of Australia Inc (MIFA)www.mifa.org.au

Mental Health Council of Australiawww.mhca.org.au

Association of Relatives and Friends of the Mentally Ill (ARAFMI)www.arafmi.org

Lifeline13 11 14

Be optimistic about the future. People can live well with, and after having had, schizophrenia.

Date of preparation: January 2014.

Janssen-Cilag Pty Ltd. ABN 47 000 129 975.

66 Waterloo Road, North Ryde NSW 2113.

Phone: 1800 226 334 AU-INS0153

Saatchi & Saatchi Health HJP0110 1/14.