Understanding Voices - a guide for relatives and friends

contents

acknowledgements

Invaluable feedback and comments received from: Gordon Mitchell, Consultant Psychologist Dr Mary Stewart, Consultant Psychiatrist (Both with Fife Primary Care Trust).
Layout by Lynda Sloan, Fife Families Support Project.

For copies of this booklet, contact the address/email at the end of this file.

preface


This booklet was written in response to a number of people in Fife caring for someone who hears voices. They were unclear about what voices were and how best to support their friend or relative who was hearing them. There seemed to be a real need for some basic information and this booklet is an attempt to meet that need.

This is not a comprehensive guide but the authors hope it provides some useful initial information and painters to sources of further help - especially for people who have no previous experience of someone hearing voices.

The booklet has been written jointly by Fife Families Support Project and Fife Hearing Voices Network. Both projects are managed by the National Schizophrenia Fellowship (Scotland): a national charity involving support and action for people affected by mental illness.

However, while hearing voices can be an aspect of the experience of schizophrenia, we would stress that hearing voices does not mean someone has schizophrenia. Many conditions can lead to hearing voices and there are many people who hear voices and have no recognised mental illness. May 2000

voice hearing myths

  • Only people diagnosed with schizophrenia hear voices
  • Voices make no sense
  • There is nothing anyone can do
  • Talking about voices makes them worse

understanding voices

what are voices?

Often referred to as auditory hallucinations, it has been traditionally thought that voices made no sense and therefore could not be understood.

Now more people are recognising that voices can be understood in the context of a person's life experiences and often reflect issues which for a voice hearing person have been difficult to deal with.

are voices real?

As yet we do not fully understand the mechanisms that cause someone to experience voices. Progress is being made but what is certain is that voices are very real for the person hearing them. There is no doubt, for the voice hearer the perception of voices is similar to everyday hearing whatever their possible origin.

Voices are very real for the person hearing them. There may be one voice or there may be several voices, they may be recognised as someone known and the voice hearing person may refer to them by name.

what's it like to experience voices?

It is estimated that only 20% of people find their voices to be reassuring.

More often voices may be perceived by the hearer as threatening, powerful and very disturbing. The content of the voices can bring anxiety, despair and fear.

Voices most commonly have a great deal of power over the voice hearing person.

this power is established in many ways:

Voices may know secrets about the person which only they know, to the exclusion of family, partner or friends, and this provides evidence to your relative of the voices added power.

Voices may also appear to know what an individual is thinking or planning.

All of this makes someone feel very vulnerable and exposed, believing that the voices know personal thoughts and feelings previously known only to the individual.

Within this context you can understand how it becomes difficult to distinguish between thoughts and voices.

what kind of things can voices do?

They may use their power to be directive - give instructions, with consequences if the action is not carried out. This can be very difficult for a voice hearing person; compliance with voices may placate them and reduce the ongoing pressure but it also means a sense of failure having given in to the voices' power. Not complying with the wishes of voices may serve to exacerbate them further and this places the voice hearer under a great deal of pressure. Really, a no win situation.

They may make comments about the person - their actions, what they have chosen to wear or how they appear to others. Voices can be very derogatory with the effect of lowering self esteem thus gaining more power. They may refer to failures in a person's life: academic, for example, or a broken relationship.

Comments about others: a partner, relatives, close friends and neighbours are often the target of voices, advising the voice hearer who can and cannot be trusted. Once again they will in their own way provide evidence to support their advice.

People talk about first hearing voices, about trying to make sense of them and being afraid to tell others.

There are many worries for the person -

  • am I mad?
  • if I tell will I be hospitalised?
  • am I the only person ever to have experienced this?
  • what will happen? will the voices go away or will they remain?
  • why has this happened and what can I do?

REMEMBER

All these concerns are within the context of voices being present and exerting their power.

Common ways to cope with voices

  • denial, believing that if the voices are denied they will go away
  • constant activity
  • playing music loudly, trying to drown out the voices
  • alcohol misuse in an attempt to blot out the voices
  • drug misuse, this may be prescribed medication as well as illegal drugs
  • allowing fear and frustrations to take over
  • becoming isolated
  • taking to bed, turning night into day
  • self harm
  • letting the voices take charge
  • taking instruction from voices, carrying out what appears to be bizarre patterns of behaviour.
They may also have developed more constructive ways of coping with their voices, look out for these - sometimes they appear to be quite unusual e.g. making never ending lists, being meticulously prepared for what seems to be a simple task.

Although doubtless of concern to you but nonetheless just plain exasperating, these ways of coping may be the best that person knows of.

why can't we talk?

Of ten people find themselves so confused and frightened by their voices they just want to escape. Sometimes voices will be so chaotic and take so much attention and energy that communication with others becomes almost impossible. It really isn't about not wanting to talk so much as not being able to.

what can I do?

Family members and friends often suspect that the person they care about is hearing voices but attempts at confirming this result in confrontation and denial with people becoming upset and feeling useless and unable to help. Don't be despondent, it may be that he or she is still coming to terms with voice hearing and is trying to make sense of their power and controlling ways.

More positively, it may be that they have chosen to talk to someone outside the family. This doesn't reflect on the quality of your relationship - it does show that he or she is able to make choices. We all have to get to grips with our experiences before we can talk openly about them and the experience of voice hearing is no different.

If, however, your friend or family member is willing to talk to you about their voice hearing experiences, the following points may be of value. There are no strict guidelines and flexibility is the key.

DO acknowledge what the voice hearing person is experiencing and acknowledge the fears and anxieties they may have resulting from their voices. It is probably best not to say you know what it's like to hear voices - you don't unless you experience voices.

DO remember that the voices may be directing your friend/relative not to heed you and so there are c lot of mixed messages for him or her to take on board acknowledging this may provide reassurance that you do have an accurate sense of what they are experiencing.

DO be honest and don't give false assurances - they may be an easy option but will only lead to a lack of trust at a later date and may actually prove the voices correct - for better to reach an honest compromise - be honest and provide plenty of encouragement.

DO listen and try not to dismiss the ideas and beliefs the person has about their voices The voices may make these seem perfectly logical.

DO help tease out voices but don't openly challenge them, this will only make justifying what the voices are saying more important; this may be frustrating for you but remember we all have our own perspectives.

voice hearing - denial or acceptance?

Voice hearers have recognised that a person's beliefs and attitudes towards their experience is crucial to how they cope. To cope more positively, voice hearers try to develop a more constructive relationship to their experience of voices, helping them feel more in control and less hopeless.

the way forward

medication

From a medical point of view, medication is an important part of treatment for symptoms such as voices.

However, among people who hear voices there are mixed views about medication. Some people say medication helps while others say medication can actually make life more difficult. Research also indicates that a significant minority of people will not be helped by medication, or can become unwell again even while taking medication.

common medication

The drugs most likely to be prescribed are a kind known as Neuroleptics or Anti-Psychotics. Most come in the form of tablets or syrup, while some come in the form of an injection. Injections in crisis are usually given in hospital, while a form called a Depot Injection is longer-acting and can be given anywhere including at home. The Depot is injected into muscle tissue and is slowly released over a period of a week to a month usually.

Some of the common drugs are: (This is not a comprehensive list)

Chlorpromazine Clozapine Flupenthixol Haloperidol Olanzapine Risperidone Sulpiride Thioridazine Zuclopenthixol

Your doctor, hospital pharmacists or some of the organisations listed at the end of the booklet can provide further information about these and other medical treatments.

These drugs work in different ways, usually in relation to chemical transmitters in the brain. They do not cure illnesses such as schizophrenia, but sometimes they can help reduce some of the worst symptoms including voices.

On the other hand some people say the drugs reduce the voices to whispers or incoherent mumbling, which can be more disturbing than being able to hear clearly what the voices are saying. In addition, some of the side-effects can be troublesome or even severe which again can make some people wary of medication.

Another difficulty is that because medication may help a person feel better they might stop taking it, which can sometimes result in them becoming unwell again. Similarly, voices may tell the person that they are better or that the medication is poison, so again they might be reluctant to take it.

In spite of this, it is important to remember that often the person does know what is best for him/herself.

A common criticism from service users and carers is that medication is often the only option for treatment offered by psychiatric services.

Recent evidence suggests that drugs are most effective when part of a wider treatment plan e.g.

  • help with the daily activities of living
  • reducing stress or finding more effective ways of dealing with it
  • social support and acceptance
  • support and information to family members and informal carers
  • having a real say in one's treatment and care

impact on family and friends

If you live with someone who hears distressing voices, you do not need to be told how that can feel. However, you may think you are alone in this experience.

People are individuals with individual experiences. This is true for people who hear voices and for the way in which that may impact on family and friends.

However, you are not alone. For, while your experience is unique, there are themes which come up again and again for many people. You may recognise some of the following:

denial

  • not wanting to believe the person really hears voices or hoping this is just a phase they are going through
  • avoiding the voices by, for instance, not referring to them when the person seems well
  • avoiding the person

guilt

  • sometimes believing that you caused the person to have a mental health problem whether through upbringing, passing it on through your genes, putting them under too much pressure, or not putting them under enough pressure

helplessness

  • not knowing how to help
  • being of raid you might make things worse if you say or do the wrong thing
  • uncertainty and not feeling able to know how the person will react at different times
  • not knowing where to turn for help
  • sometimes being left in the dark by professionals

effects of stigma

  • you may not feel able to talk to people you would normally have spoken to, leading to isolation
  • employment difficulties possibly for yourself as well as the person hearing voices

loss

  • the person may have changed: finds it difficult to do things they used to enjoy or finds conversations difficult or withdraws into themselves. That can feel like you have lost the person you used to know
  • sometimes, especially for parents, there can be a loss of the hopes you had for your child if they have an illness that is severely disabling

family relationships

  • the family can end up focussing all its attention on the person who hears voices which can result in various tensions
  • brothers or sisters may find it difficult to understand or feel left out
  • not all members of the family may be able to be equally supportive which again can cause tensions,

coping with behaviour

There may be behaviour that is difficult for you to cope with such as: withdrawal; seeming distracted much of the time; ideas that seem illogical; difficulty in coping with complicated conversations or humour; anger or frustration at the voices

Moods may be changeable without any obvious cause which can lead to the feeling of 'treading on eggshells' as you do not seem to know what might spark the person off

These are all normal experiences, but when you think about them it is no wonder that many carers feel under a lot of stress.

To cope with that level of stress is difficult for anyone, and it has been known to cause carers' physical and mental health to suffer also. In view of that, it is important to recognise that you too need support - not just the person who is hearing voices. If that feels selfish, then remember we all need to look after ourselves first before we can look after others.

looking after yourself

This chapter may read like a lecture, but it is meant merely to give some pointers.

A common view is 'As a carer, I do not have time to look after myself.' Yet, looking after yourself is as important as looking after the person you care for.

Some of the following things may not seem right or possible for you. That's okay. Just choose what works for you.

be kind to yourself

Don't give yourself a hard time for not always being able to help. You love and care about the person. That matters.

Take time out if you can - having a break makes us more efficient and can allow us to look at a situation more objectively

Talk to someone you trust - most of us need a chance to sound off; get some acknowledgement, reflect on what's happening, feel we are not alone.

Find your own positive ways of coping with stress such as: relaxation; exercise; reading a good book; playing; massage or whatever.

be informed

Many carers find it helpful to have information about mental health, treatments, and what services are around.

If possible, listen to what the person says him/herself - about what works for them, what helps and what hinders. Often, they are the real experts.

be realistic

Remember, no matter how much you wish you could, you can't 'cure" the voices. However, you can help someone to cope with them. Sometimes, though difficult, that can mean giving the person space to find their own ways of coping. Giving someone space is not the same as not caring.

be supported

If you are providing a lot of care then you may be eligible for a Carers Assessment. This is meant to look at what support you need in order to care f or someone effectively, and is carried out by the Social Work Department.

Respite is another source of support although at the time of writing there is a shortage of appropriate respite in and around Fife. Again Social Work can advise on this.

Use groups and organisations that exist to support carers with information, advice, and a listening ear.

a final word from fife hearing voices network

The role of Fife Hearing Voices Network

Who better to provide support then others who share similar experiences and have a true appreciation of the courage it takes to address voices - such is the very ethos of Fife Hearing Voices Network.

By promoting hearing voices groups, our project enables people who hear voices to come together in order to provide mutual support. With the support of other voice hearers positive coping strategies can be developed and practised.

some examples of positive coping strategies:

  • Focussing - actively listening to the voices, engaging with them.
  • Contractual - making an agreement with the voices, perhaps to listen at a predetermined time.
  • Distraction - concentrating upon an activity when voices are present.
  • Selective - listening to specific voices or only when the content is less threatening. Particular strategies may be more helpful than others and many people have developed their own individual strategies.

helplines

carers support

Fife Families Support Project 01592 641401
Princess Royal Trust Fife Carers Centre 01592 642999
Carers in Action for Mental Health 01383 881794 and 01592 720441

mental health support projects

Fife Depression Group 01592 743682
Fife Hearing Voices Network 07769 976638
07939 263668
Kirkcaldy Area Abuse Survivors Project 01592 644217
Dunfermline Area Abuse Survivors Project 01383 739084
Adults Learning Freedom from Abuse 01334 657091

Publication Funded By Fife Council Social Work Service and National Schizophrenia Fellowship (Scotland)

Fife Hearing Voices Network
The Cottage
Burn Close
67 Bonnygate
Cupar KY15 4BY
Tel: Central/East Fife 07769 976638
Tel: Kirkcaldy/West Fife 07939 263668

Fife Families Support Project
Unit 5, Fraser Buildings
Millie Street
Kirkcaldy KY1 2NL
Tel: 01592 641401
email:
[email protected]

May 2000

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