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OBSESSIVE COMPULSIVE DISORDER A GUIDE FOR PATIENTS AND THEIR FAMILIES

This information booklet has been written to explain to you and your family something about Obsessive-compulsive disorder (we'll call it OCD for short). A short booklet cannot cover everything, so please ask your therapist or Doctor if there is any more information that you need or anything which you do not understand.

WHAT IS OCD?

OCD can take many different forms, but most commonly consists of repetitive thoughts and/or actions. The thoughts are usually unpleasant and sufferers often know that the actions carried out are unnecessary. They therefore try to stop having the thoughts or carry out the actions, but are unable to resist. They are obsessed with the thoughts and they feel compelled to carry out the actions; this is where the name 'obsessive compulsive' disorder comes from.

Although these thoughts or actions may sometimes be quite strange, we should make it clear straight away that having obsessional problems does not mean that you are going 'mad'. OCD is not a mental illness, it is an exaggeration of normal thoughts and actions which happen in nearly everyone. Most people find that from time to time they have worrying thoughts which they cannot get out of their heads, or they carry out repetitive actions which are not really necessary. Think of the number of people who cannot go to bed without checking the locks and the gas taps, even if they really know that they are safe. It is just tt~at for some people this kind of action gets out of control and becomes troublesome.

Recent research has shown that the line between 'normal' and abnormal' obsessions is often very vague. In general we say that someone has OCD if the problems have become so severe that they are interfering with the quality of the person's life. It is thought that around 2% to 4% of people have OCD in some form, though not all of these need treatment.

Examples of OCD

Typical examples of OCD are described below.

Mrs A is constantly afraid of catching cancer from contact with other people. She is particularly afraid of touching people who may have been in hospital where cancer patients have treatment. However, she tries to avoid touching anyone because they may have touched someone else who has had contact with cancer. Because of this she tries to avoid going out of the house at all. If she does touch someone, she has to wash her hands and her clothes extremely thoroughly, sometimes taking hours. She also insists that her husband and children should take off their clothes and wash themselves thoroughly whenever they come into the house. Her family are becoming increasingly inpatient with this. They are also beginning to resent her constant demands that they should tell her in great detail about whether they have been. This is so that she can be reassured that they have not been anywhere 'dangerous'. She knows these fears are unrealistic but she cannot rid herself of the worry that she will catch cancer if she does not take these precautions.

Mr B feels he constantly has to check things in order to prevent some mishap. Getting out of the house can take him over an hour. He has to go round the whole house repeatedly checking that ashtrays do not have burning cigarette ends, plugs are unplugged, switches,water and gas taps are switched off and repeated a certain number of times before he can be sure that they have been done 'properly'. At work he is always behind because he has to check and recheck everything he does in case he has missed some small mistake. Again,he feels that his precautions are really too extreme, but whenever he tries not to carry out his checks he feels so uncomfortable that he soon gives in and does check.

Mrs C has recurring thoughts that she might harm her young child. In reality she loves her child and is a good mother, but she is constantly plagued by thoughts that she might somehow lose control and attack him. She has grown increasingly worried that she must be 'going mad' because she has these thoughts. Though she tries to forget about them, they keep coming back many times a day. The only way she can calm herself is to make a particular prayer to herself a certain number of times. In this way she gets temporary relief, but the thoughts soon come back.

What happens In OCD?

The most common symptoms of OCD are described below. To make things clearer, some of the technical words often used in talking about OCD are explained.

Obsession or obsessional thought or rumination: These words are all used to describe the original fear or unpleasant thought. Mrs A's fears about cancer, Mr B's worries about some disaster and Mrs C's thoughts about harming are all examples of obsessions. Obsessions can be divided into three common forms. They may be simple thoughts, in words, such as "I might get cancer", they may be mental pictures, for example an image of something terrible happening; or they can consist of impulses, such as an actual urge to harm someone.People are often afraid that one day they will act on these urges (for example Mrs C's fears of harming her children). Infact, long experience with OCD tells us that these urges are rarely if ever carried out.

The most common areas in obsessions are dirt and disease, violence, other kinds of harm coming to people, and sex. Because the thoughts are unpleasant or frightening, they make the person with OCD feel very uncomfortable or anxious. Most often the discomfort aroused by the obsessions leads the person to do something to try to feel better. These actions (“rituals”) are described below. However, there are also some people who have obsessions without obvious rituals.

Compulsion or ritual: This term is used to mean the action which the person with OCD feels compelled to carry out. Rituals are divided into two kinds. First, there are actual actions which somebody watching would be able to see. Mrs A's washing and Mr a's checking are examples of this. In fact, washing and checking are the two most commend kinds of obsessional ritual, though there are many others. Often, as with Mrs A, the sufferer's family also become involved in ritual activity.The other kind of ritual is a mental action, such as Mm C's “good thoughts”. Obviously no-one else can know about this unless she tells them.

Reassurance: Another way in which many people with OCD try to reduce their discomfort is to ask others, such as their family or doctor, for reassurance about their fears. Mrs A's demand for details of her family's movements is an example of reassurance-seeking. Sometimes people spend time trying to reassure themselves. For example Mrs A might go over her day in her mind. Trying to be sure she had not touched anyone dangerous'.

Avoidance: Often the worries are 'triggered' by certain situations or people, such as touching people for Mrs A. The-person with OCD then tries to avoid such situations in an attempt to reduce their fears. Mrs A's avoidance of going out is an example of this. This can be one of the most crippling symptoms of OCD. Life becomes more and more limited by the situations which must be avoided.

How does someone develop OCD

As we said in Section 2, the experience of having unwanted, intrusive thoughts are very common. The question is therefore why for some people this gets out of hand and becomes so troublesome. Research is still at an early stage but there seem to be a number of answers to this question.

First, it appears that people with OCD may simply be more likely to become tense and anxious than most people are. So any upsetting experience may be worse for them than for someone else.

Second, people with OCD often have extremely high standards, particularly in the areas of morality and responsibility. This means that a thought which someone else would just shrug off is extremely distasteful or unacceptable to the person with OCD. Third, we know that upsetting thoughts become worse at times of stress. OCD often begins at such times, especially if it involves coping with extra responsibility (for example around puberty, when starting a new job or when having children. After OCD has begun, it usually gets worse if the person is under any kind of stress. Finally, we know that people find worries harder to control when they are very distressed. The result of all these effects is that people with OCD become very distressed when they have certain thoughts. This distress then actually makes it harder to just dismiss the thoughts, as someone else might. Thus people with OCD, trapped between severe worries and their inability to control them, look for some other way to cope. They tend to develop 'rituals.'

Why do the problems continue and get worse?

The actions which people with OCD perform what we have called 'rituals' - (see Section 4) seem to work in the short term. If you can't rid yourself of a fear of catching a disease, it seems logical to try to dean yourself. It probably will make you feel better, at least at first. Avoiding particular situations or getting reassurance from friends and family does also happly to feel less worried, for a while. But these actions work against you in the long run.

There are two main reasons for this. First, because rituals do work to reduce your discomfort, they become a stronger and stronger habit. It's a bit like smoking for a cigarette smoker of 20 a day tends to become 30 a day, and then 40 a day and so on. If you feel uncomfortable and you know that some action will make you feel better, it's natural that it's hard to resist carrying out that action. The trouble is that soon your whole life is taken up with rituals or avoidance. You never learned any other, less disruptive, way of dealing with worries.

Second, by controlling the discomfort with rituals you never get a chance to test whether what you fear is really as likely as you think. By definition your worries are in some way unrealistic, but the only way to really find this out is to face up to 'them without rituals.

There is an old joke about a man standing on the street waving his arms up and down. When someone asked him what he was doing, he replied 'keeping the dragons away", the second man said 'but there aren't any dragons around here", to which the first man replied,'That shows how well it works!"

The person with OCD may be a bit like this man - the rituals serve keep away non-existent dragons. What is really needed is to learn that there are not dragons.

Making sense of OCD

Let us try to bring together what we have learned about so far. If we look at it from the point of view of the sufferer, we can see that OCD is not as 'crazy' as it sometimes seems. Having unpleasant thoughts is very common, but some people become very frightened by them. If you have an idea that something terrible will happen unless you do something, it seems perfectly sensible to try to prevent it. However, the action you take to prevent disaster actually strengthens the original idea and so you get into a vicious circle. The fears get worse and worse, and the preventive action comes to rule your life. In the next part of this manual, we shall talk about what can be done about this.

THE TREATMENT OF OBSESSIVE-COMPULSIVE DISORDER

Treatment

Actual rituals, mental rituals and reassurance are all similar in one important way. They are all ways in which people with OCD try to reduce the discomfort arising from their worries. We therefore say that they are all ways of 'neutralising' the person's worries. As we explained earlier. The problem is that though neutralising may work in the short term, it makes things worse in the long term. The task in treatment is to find ways to learn that the fears are groundless and can be coped with without rituals.

Assessing the problems

Before treatment begins, your therapist will need to carry out a thorough assessment of your individual problems. Treatment usually follows certain broad guidelines, but it can only be effective if it is tailored for you as an individual. Part of the assessment will consist of interviews in the clinic but usually an important part depends on you. The therapist needs to have a detailed picture of your problems before they can be tackled. Often the best way to get this is for you to keep various kinds of records in your daily life outside the clinic. These 'on-the-spot' records are much more useful than trying to remember everything and tell the therapist in the clinic. Because the rituals and avoidance become such strong habits, it can be hard to notice all the obsessional behaviour you perform. It may be useful to ask yourself some questions:

  • What would I not be doing if I didn't have these problems?
  • This will tell you something about your neutralising.
  • What would I be doing if I didn't have these problems?
  • This will tell you about the things you avoid.

What happens In treatment

After your therapist has gathered enough information (usually after 2 to 3 sessions), an individual treatment plan will be made. The prospects for sufferers from OCD had improved dramatically in the last 15 to 20 years. Before then, OCD often went on for many years, or even a lifetime.

With modem treatment, research shows that 70-80% of sufferers will greatly improve within months and will remain well. However we should say that the chances of success depend greatly on you. Modern treatment is very active and depends for its success on your efforts. Your therapist will offer you support and advice but in the end what you put into it is most important.

For most people with OCD, the treatment of choice is what we call 'exposure with response prevention'. As we said before, treatment has to be individually planned, so we can't give you an exact idea of what will happen or how long it will take. However, we can give a broad description.basically,'exposure and response prevention' means that you need to expose yourself to feared objects or situations, whilst preventing the usual neu~alising (rituals, avoidance and so on. In this way you can get used to the things that worry you and learn that nothing terrible actually happens. The details of how quickly you expose yourself to worrying situations and which neutralising behaviour is banned will be worked out with your therapist. This probably sounds like hard work, and indeed it can be. However, most people find that with the right kind of help and support, they can carry out such a programme and overcome their problems.For some people who have few or no rituals, where the main problem is the worrying thoughts, different trea~ents may be needed. These treatments involve learning either to control the thoughts directly, or to become less distressed by them so that they become easier to dismiss.

Some Important points about treatment

It should be stressed that treatment is a joint task between you and your therapist. Though some of the things you are asked to do may be difficult, you will never be asked to do something to which you have not agreed. No surprise will be sprung on you - in the end, it is always up to you to decide what happens. During treatment you may well find that your therapist asks you to carry out tasks which do not seem like 'normal' behaviour. For instance, someone who washes too much may be asked not to wash at all for some period. Clearly most of us do wash our hands in everyday life, but what happens in treatment is not necessarily to be taken as a standard for 'normal' behaviour. if someone breaks a leg, we put it in plaster, but this does not mean that we should all wear plaster on our legs all the time!

Many people find that at some time during treatment they are no longer sure what is 'normal' and what isn't. Don't worry if this happens. Once treatment has helped to reduce your excessive worries, you will be free to decide your own standards, standards which are not controlled by fear.

Most people do become uncomfortable at times during treatment. Do try not to let this put you off sticking to the agreed programme. If you can stick to the programme, the discomfort will decline as you improve. This discomfort is normal, and perhaps even necessary. You cannot lose a strong habit, which has grown over months or years, without any discomfort. It would be much easier for all of us if there were a completely comfortable form of treatment, but so far we do not know of one. Exposure and response prevention offers you the best hope of improvement.

Of course, there are ways of keeping the discomfort within manageable limits. Your family and friends can give you support and encouragement.

How can you get the best out of treatment?

First, please be honest with your therapist about your successes and failures. There may be a temptation to hide any failures in the programme, but this will not help. It is perfectly normal for things to be difficult sometimes, but your therapist needs to know what is happening to be able to help you. 'Failures' may actually have a positive value in helping us to learn more about the problems and be better prepared for future difficulties. Second, please don't hide embarrassing or unpleasant thoughts. By definition, many obsessional thoughts are unpleasant or silly, but your therapist will not be shocked or offended by them. Many other people have had the same thoughts.

Third, try to be strict with yourself in deciding whether behaviour is obsessional or not. Often the best rule is to assume it~s obsessional until you both agree that it is not! This may apply particularly to asking for reassurance. It can be very hard not to get reassurance but it is important that you learn to cope, without depending too much on your family or friends. They can help by supporting your efforts, but not by reassuring you, or by helping you to perform rituals.

Finally, it can be very helpful to have a plan for what to do if you do slip up and perform some rituals. Often the best plan is to deliberately undo' the ritual. For instance, if you wash when you shouldn't have, go back and deliberately touch something 'dirty'. Your therapist can help you work out a plan which will be helpful for you.

ADVICE FOR FAMILY AND FRIENDS

Advice

First, don't become involved in helping your relative witt~ their';rituals' (such as washing or checking), and don't provide reassurance for them. It may be easier for you and them in the short run. Obviously this can be difficult as we all want to help our loved ones. But this is an area where the principle of being cruel to be kind' often applies. The therapist may discuss with you ways of handling this situation. Often the best way is to calmly say "We've agreed that it doesn't help to do this" and then leave the situation.

Second, don't become angry if your relative slips in the programme of treatment. Anger will make them feel bad and this makes the problems worse. Instead, do concentrate on supporting your relative's efforts and praising them when they do well. If they do break the agreement, be firm but calm in reminding them that this will not help in the long term. Try to talk about something else more positive. Though their worries may seem senseless to you, remember the fears are very real to them. Think about something you are afraid of. For example you might have a fear of heights; imagine how you would feel if someone tried to get you to stand on top of a high cliff.

How can you maintain improvement?

First, it is important to recognise that you will need to remain alert for some while. It is easy slip back into old, bad habits. One ritual does not mean you are back to square one, but it is something to be tackled straight away, before it leads to more rituals. Make sure you do not slip back into avoidance of difficult things either. Make yourself confront these fears, without rituals, and see how they diminish. A good rule to be kept is, “If it frightens you, to.”

Second, we know that obsessional problems are usually worse within you are under any kind of stress. You need to be more alert at these times, and you may need to learn better ways of coping with the particular things you find stressful. Your therapist can help you with this.

Finally, remember that if you have a full and satisfying life, the obsessions are less likely to trouble you. You may also find that when the obsessional problems have decreased you are left with a lot more spare time. Try to find things that you enjoy to fill this time; going out with family or friends, going back to work, hobbies, evening classes, etc. Use the time you now have available.