Understanding obsessive-compulsive disorder (OCD)

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What is obsessive-compulsive disorder?
What are the signs of OCD?
What causes OCD?
What sort of treatment is there?
What help is available?
What can people do for themselves?
What can friends or family do to help?
Useful organisations
Further reading

'When I was four years old I contracted a terrible case of impetigo... The doctor told my mother that I probably got the impetigo from putting dirty things such as toys or unwashed fruit in my mouth, so from that day forward she washed everything I came in contact with everything. She washed my pencils and my crayons; she washed my dolls and my doll's tea set (just in case); she washed my food... And most of all she washed me. When I came in from playing outside, after I used the toilet, after playing with the dog, or just because I was standing around and hadn't been washed for a while.... When my hands were dirty, or I thought they were, they had a special feel about them. They felt huge and as though they were vibrating. I tended to hold them away from myself. Along with the sensation in my hands came a gripping feeling in my stomach. My thoughts were, "I can't feel right until I wash my hands. I must feel right immediately or something bad will happen." The issue shifted from the dirt on the hands to the feeling in the stomach and the vibrating feelings I felt in my hands... My head was saying, "Not dirty no danger", but my stomach was still saying, "Danger, danger, do something quick!"'
The Sky is Falling Raeann Dumont (W. W. Norton 1996)

'He felt compelled to check that "everything was right", so would go back over almost everything he did. The most serious doubts he had were about doors, windows and gas taps, which he checked several times before leaving the house in the morning... and at night. He could not put anything in an envelope or a file, drawer or cabinet without repeatedly checking that he had written exactly the right things. (This man had an exaggerated sense of responsibility and felt he had to prevent errors or disasters).'
Obsessive-compulsive Disorder The facts Padmal de Silva and Stanley Rachman (OUP 1996)

This booklet is an introduction to obsessive-compulsive disorder (OCD). The symptoms of OCD can be very distressing and can seriously disrupt normal life. This booklet aims to help people understand it, gives an outline of the kinds of treatment or help available, and suggests how people can help themselves.

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What is obsessive-compulsive disorder?

If you have obsessive-compulsive disorder (OCD), you feel you have no control over certain thoughts, idea or urges, which seem to force themselves into your mind, like a stuck record. These thoughts - obsessions - are often frightening or distressing, or seem so unacceptable that you can't share them with others. Contained within the obsession is an underlying belief that you, or other people, may come to harm. However absurd or unrealistic this belief, you can't dismiss it or reason it away. It creates unbearable anxiety, and makes you feel helpless to do anything except perform the particular ritual which can neutralise the devastating thought.

The irresistible urge to carry out such rituals is known as a 'compulsion'. This could be something like repeatedly opening and closing a door, washing hands, repeating a litany, or counting. In other words, exaggerated elements of everyday actions and routines. You may feel compelled to do these actions over and over again, because of an unquenchable fear that you didn't do it properly last time, or because the unwanted thoughts intrude again. The relief from the anxiety is only temporary.

OCD is similar to a phobia, which is another anxiety disorder. In both cases, fear brings on symptoms of anxiety and panic, including a racing heart, churning stomach, dizziness, shortness of breath, sweating and trembling. A phobia also involves an exaggerated fear of something that doesn't represent a realistic danger, but other people can usually relate to it, or even share it. But with OCD the fear is of your own thoughts, and other people may not be able to relate to this or understand them at all. What's more, someone who has a phobia can avoid the thing that triggers their phobia, such as cats or spiders, but with OCD, these devastating thoughts are unavoidable, and are constantly ready to emerge. (For more information, see Understanding phobias)

OCD isn't a psychotic disorder, such as schizophrenia, whereby people feel that certain thoughts and ideas come from somewhere outside themselves (hallucinations). If you have OCD, you know that it s your own thoughts tormenting you. Some people only experience obsessive thoughts, without having any compulsions. Others have compulsions without knowing why they feel the need to do them.

The anxiety caused by experiencing obsessions and compulsions feeds back into the problem, creating a vicious circle and making the OCD worse. Often, people with OCD are also depressed, and this may also be partly or wholly due to the experiene of OCD.

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What are the signs of OCD?

We all worry, occasionally, about whether we've left the gas on, or the door locked, and we describe people as being obsessed with work, football, a girlfriend or boyfriend. Many of us indulge in small, everyday rituals without thinking, such as throwing salt over our shoulder, or not crossing the path of a black cat. We may be compulsive in the way we straighten things up, or in cleaning more than is strictly necessary. As many as four-fifths of us may experience minor obsessions or compulsions, such as these, from time to time.

The idea of 'being obsessed' is something that is very much part of everyday language; the distinction between this and OCD is in its severity. With OCD, the problems are so severe that they interfere with everyday life. It might mean spending eight to ten hours a day washing, with hands red-raw and bleeding. Or it might mean repeatedly dressing and undressing, or running up and down stairs.

You may understand that the way you are behaving is irrational, and may feel ashamed and alone because of it, and unable to ask for help. You may not realise how common such problems are. OCD affects people of all ages. It's possible that up to three per cent of the population may experience the symptoms, although only those who are most severely affected usually ask for help.

Some research suggests that as many as one per cent of children may have OCD, at any one time. Problems can start as young as four or five years old, and may continue into adult life.

The kind of thoughts and rituals vary from culture to culture, but there are some common examples:
Common obsessions:

• fearing contamination
• imagining doing harm
• fearing your aggressive urges
• intrusive sexual impulses
• excessive doubts
• 'forbidden' thoughts
• needing things to be perfect
• needing to confess something

Common compulsions:

• washing
• repeating actions
• checking
• touching
• counting
• ordering or arranging
• hoarding or saving
• praying

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What causes OCD?

There are different theories about why OCD develops. The origins may lie in childhood and early experience. One or both parents may have had similar anxiety and shown similar kinds of behaviour, such as obsessional washing, for example. Or it may be linked to a trauma, such as being sexually abused, possibly causing an obsessive fear of men and a dread of contamination by them. The obsessions can be triggered by particular memories and experiences.
Personality may play a large part in whether and how people respond. It's suggested that people who are perfectionists by nature may be more prone to obsessions or OCD.

Another theory is that lack of a brain chemical, serotonin, has a role in OCD, although experts disagree about what that role is. It's unclear whether changes in the levels of this chemical are a cause or effect of the problem, but some medication is based on adjusting these levels.

The way you see the world will influence how you respond to life. These views may be based on assumptions that are flawed or incorrect, without you even knowing it, because you've never challenged them. These convictions may have become quite unshakeable, because your experience of life always seems to reinforce them. To give a very simplified example, you might be brought up by anxious parents to feel your environment is very threatening. This may lead you to believe that unless you wash constantly, dangerous germs may make you very ill. This view could be based on your parents misunderstanding information from a doctor. As a result of this, the world may feel like a very dangerous place to you, because germs are all around and can't be controlled.

In this way, your experience of life may already have made you more prone than average to OCD (and there are likely to be other factors or negative experiences contributing to this). If you, or someone you love, then fall very ill, it may reinforce your feelings of vulnerability, making you more anxious. You may begin to be troubled by frightening thoughts that something bad is going to happen to your own children. You may eventually come to feel that the only way to keep everybody safe, and to cope with your intolerable anxiety, is to wash your hands, repeatedly.

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What sort of treatment is there?

The symptoms of OCD can clearly be very distressing, and performing endless rituals will have a serious impact on your life. While there is no instant cure for OCD, there are a number of different treatments and coping strategies you could adopt to help overcome your symptoms.

You may want to get professional help, or work out your own strategies. There is no right or wrong way to feel or thing to do. Different approaches work for different people. As a first step, you might visit your GP, who could refer you to a psychiatrist or psychologist. When doctors make a diagnosis of OCD, they use a list of medical criteria. The diagnosis is based on how many of these criteria you meet, and it also tells you how severe your problem is, and therefore what sort of treatment might work for you.

Medication
Some people find drug treatment helpful for OCD, either alone or combined with talking treatments. The drugs prescribed most commonly are SSRI antidepressants, such as fluoxetine (trade name, Prozac), fluvoxamine (Faverin), paroxetine (Seroxat) and sertraline (Lustral), which are all licensed for the treatment of OCD. Fluvoxamine and sertraline may both be given to children under specialist advice. (SSRI antidepressants should not be used to treat depression in children under the age of 18, but this does not apply to these two drugs for treating OCD.) These drugs may have side effects to begin with, including nausea, headache, sleep disturbance, gastric upsets and increased anxiety. They may also cause sexual problems.

The tricyclic antidepressant clomipramine (Anafranil) is also licensed for the treatment of obsessional states in adults. The side effects can include a dry mouth, blurred vision, constipation, drowsiness and dizziness. Withdrawal symptoms may cause problems.

In the past, people may have been given drugs from the benzodiazepine group, such as diazepam (Valium), to reduce anxiety, but this is now discouraged. They are limited to short periods of treatment for those people who are experiencing very severe anxiety. This is because people may become dependent on them, and because there can be serious problems with withdrawal. Unfortunately, it's now clear that many people experience similar problems coming off SSRI antidepressants, especially paroxetine. It's advisable to withdraw gradually. You can find more information about these drugs in Making sense of antidepressants

Talking treatments
Some people have found combining these therapies with medication especially useful. There are different kinds of suitable talking treatments, including counselling, psychotherapy and cognitive behaviour therapy. Access to these treatments on the NHS is very variable, but you could also find your own therapist or source of help. (See Useful organisations) Counselling provides support, usually on a once-a-week basis, helping people deal with specific problems. Psychotherapy tends to be more frequent and quite long-term, and focuses on the causes of distress, as well as developing coping strategies.

Cognitive behaviour therapy
Cognitive behaviour therapy aims to identify connections between thoughts, feelings and behaviour, and to help develop practical skills to manage them. There is considerable evidence to suggest that this therapy is especially effective in dealing with OCD. The behavioural element (also known as exposure therapy or desensitization) helps people face fears and reduces their rituals. You could work with a psychologist, a psychiatrist or a therapist within an agreed treatment plan or undertake your own programme. (For more information, see Making Sense of cognitive behaviour therapy)

Psychosurgery
Surgery on the brain - psychosurgery, also know as neurosurgery - is sometimes used in severe cases of OCD, when other treatments have been unsuccessful. This treatment is strictly regulated under the Mental Health Act 1983, and can't be given without consent. It's used very rarely. There is more information on this in Mind's Psychosurgery factsheet

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What help is available?

Under the Care Programme Approach (CPA) in England, and its equivalent in Wales, everyone referred to psychiatric services should be provided with an assessment of their social and health care needs, a care plan, a care coordinator and a regular review. You are entitled to say what your needs are and have a right to have an advocate, who can listen to you and speak for you, if you like. (A member of your family may act as an advocate, or you can ask about an advocacy service.) The assessment can also include the needs of carers and relatives.

Community Mental Health Teams
The local Community Mental Health Team (CMHT) can make this assessment. They provide services in the community through a mixed team of social and health care professionals. The team might include a social worker, (see Community care services, below), a psychiatrist, a psychologist, and a community psychiatric nurse who can help with medication. It may also include a counsellor and community support workers. One of the team members will act as care coordinator. He or she should be in regular contact with you.

Community care services
Social services can make an assessment of your needs for community care services, separately, if required. These involve everything from day care to housing needs and advice and help on practical matters, such as accommodation and welfare benefits. Their aim is to provide services in the home or in supported accommodation. You might need careworkers, and since many areas now charge for this, this cost should be included in the needs assessment. (Whether you have to pay for it yourself depends on your financial situation.)

Direct payments
Once your community care assessment has confirmed that you need services, you may be eligible to claim direct payments, which will allow you to buy the care you need yourself, rather than social services providing it. Local social services or the National Centre for Independent Living should be able to provide this information (see Useful organisations).

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What can people do for themselves?

Treatment of OCD often includes a combination of strategies, including self-help. You may wish to devise your own self-help programme, based on cognitive behaviour therapy techniques. The organisations listed on can offer advice and details of such programmes. See, also, the self-help books listed under Further reading.

Self-help groups
It can be useful to share experiences and methods of coping with others. Self-help groups can provide help, support and encouragement, whether or not you are having professional help. But they can be of particular benefit if you are operating your own programme. You could contact your local Mind association or social services, who may be able to tell you if there is a group local to you. You could also try any of the organisations listed under Useful Organisations.

Relaxation techniques
Some people have found relaxation techniques helpful. They can teach you:

• how to improve your breathing to lessen tension
• physical exercises to do to relax your muscles
• action plans to help you progress from coping with non-stressful situations, to those that you find difficult.

For local classes in relaxation techniques, contact your local library or GP. (See, also, Useful organisations and Further reading)

Local services
You should be able to get information about local mental health services from your GP, social services department of your council, local Mind association, Community Mental Health Team, or Patient Advice and Liaison Services (PALS). These include details of local projects that provide services to particular communities, such as Black and minority ethnic communities, women, disabled people, lesbians and gay men. You may also find details in your local phone book.

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What can friends or family do to help?

As a friend or family member of someone with OCD, you can help a lot just by accepting their feelings and knowing that they find it difficult to cope with them. It can be particularly difficult for someone experiencing the symptoms of OCD to acknowledge their thoughts, and if you give them the impression they are being difficult or exaggerating, it can result in greater distress and anxiety.

If they are working to a self-help programme, either on their own or with a therapist of some kind, you could find out how you can support them with this, or you could go with them to treatment sessions.

It can be distressing to be close to someone experiencing OCD. You might find it useful to talk to other people in the same situation, and to find out more about these complex problems. Try contacting one of the organisations listed below or consulting publications listed under Further reading.

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Useful organisations

British Association for Behavioural and Cognitive Psychotherapies (BABCP)
The Globe Centre, PO Box 9, Accrington BB5 0XB
tel. 01254 875 277
web:www.babcp.org.uk
Can provide details of accredited therapists

British Association for Counselling and Psychotherapy (BACP)
BACP House, 35 37 Albert Street, Rugby CV21 2SG
tel. 0870 443 5252, fax: 0870 443 5161
email: bacp@bacp.co.uk web:www.bacp.co.uk
See website or send A5 SAE for details of local practitioners

Carers UK
20-25 Glasshouse Yard, London EC1A 4JT
helpline: 0808 808 7777, tel. 020 7490 8818
email: info@ukcarers.org web:www.carersonline.org.uk
Information and advice on all aspects of caring

First Steps to Freedom
1 Taylor Close, Kenilworth, Warwickshire CV8 2LW
helpline: 01926 851 608, tel: 01926 864 473
email: info@first-steps.org web: www.first-steps.org
Practical help to those who suffer from obsessive-compulsive disorders, and to their family and friends

International Stress Management Association (ISMA)
PO Box 348, Waltham Cross EN8 8ZL
tel. 07000 780430
web:www.isma.org.uk
A registered charity for the prevention and reduction of stress

National Association of Councils for Voluntary Service
177 Arundel Street, Sheffield S1 2NU
tel. 0114 278 6636
web: www.nacvs.org.uk
Supports local voluntary and community sector

National Centre for Independent Living (NCIL)
250 Kennington Lane, London SE11 5RD
tel. 020 7587 1663
email: ncil@ncil.org.uk web:www.ncil.org.uk
Provides information and advice on direct payments

National Phobics Society
Zion CRC, 339 Stretford Road, Hulme, Manchester M15 4ZY
tel. 0870 770 0456 or 0161 226 5412
email: natphob.soc@good.co.uk web: www.phobics-society.org.uk
Counselling and helpline for those suffering from anxiety disorders

No Panic
93 Brands Farm Way, Randlay, Telford, Shropshire TF3 2JQ
helpline: 0808 808 0545 tel. 01952 590 005
email: ceo@nopanic.org.uk web: www.nopanic.org.uk
Helpline for people experiencing anxiety disorders

OCD Action
Aberdeen Centre, 22 24 Highbury Grove, London N5 2EA
tel. 020 7226 4000, fax: 020 7288 0828
email: obsessive-action@demon.co.uk web: www.ocdaction.org.uk
Specifically for sufferers of OCD

Samaritans
By post: Chris, PO Box 9090, Stirling, FK8 2SA
Helpline: 08457 90 90 90
Minicom: 08457 90 91 92
web: www.samaritans.org.uk 
email: jo@samaritans.org
24-hour telephone helpline

Triumph Over Phobia (TOPUK)
PO Box 344, Bristol BS34 8ZR
tel. 0845 600 9601
web:www.triumphoverphobia.com
A national network of structured self-help groups

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Further reading

Conquering fear D. Rowe (Mind 2003)
Coping with anxiety and depression S. Trickett (Sheldon Press 1997)
Going mad? Understanding mental illness M. Corry A. Tubridy (Newleaf 2001)
How to cope with hospital admission (Mind 2004)
How to cope with panic attacks (Mind 2004)
How to improve your mental wellbeing (Mind 2004)
How to increase your self-esteem (Mind 2003)
How to look after yourself (Mind 2004)
How to stop worrying (Mind 2004)
Making sense of antidepressants (Mind 2004)
Making sense of cognitive behaviour therapy (Mind 2004)
Making sense of minor tranquillisers (Mind 2003)
Manage your mind: the mental health fitness guide G. Butler, T. Hope (Oxford University Press 1995)
The Mind guide to advocacy (Mind 2000)
The Mind guide to managing stress (Mind 2003)
The Mind guide to massage (Mind 2004)
The Mind guide to physical activity (Mind 2004)
The Mind guide to relaxation (Mind 2004)
The Mind guide to surviving working life (Mind 2003)
The Mind guide to yoga (Mind 2001)
Obsessive-compulsive disorder: the facts S. Rachman, P. de Silva (Oxford University Press 2001)
Overcoming anxiety H. Kennerley (Robinson 1997)
Overcoming panic: a self-help guide using cognitive-behavioural techniques D. Silove, V. Manicavasagar (Robinson 1997)
Relaxation: exercises and inspirations for wellbeing Dr S. Brewer (DBP 2003)
Troubleshooters: panic attacks (Mind 2004)
Understanding anxiety (Mind 2003)
Understanding depression (Mind 2004)
Understanding eating distress (Mind 2004)
Understanding obsessions and compulsions Dr F. Tallis (Sheldon Press 1992)
Understanding phobias (Mind 2004)
Understanding talking treatments (Mind 2002)

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tel. 0844 448 4448
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This booklet was written by Fiona Hill
First published by Mind 2000.
Revised edition © Mind 2004
ISBN 1-874690-98-7

No reproduction without permission