Understanding

obsessive-compulsive
disorder (OCD)

understanding

obsessive-compulsive
disorder
Understanding obsessive-compulsive
disorder (OCD)

This booklet is for anyone who has or thinks they

may have OCD, and their friends, family or carers.
It explains what OCD is and describes what
treatment and help is available.
Contents

What is obsessive-compulsive disorder (OCD)? 4

What are the common signs of OCD? 6

What causes OCD? 8

How is OCD diagnosed? 9

What treatments are available? 11

How can I help myself? 15

What can friends and family do to help? 18

Useful contacts 20

3
Understanding obsessive-compulsive disorder (OCD)

What is obsessive-compulsive disorder (OCD)?

Obsessive-compulsive disorder (OCD) is described as an anxiety disorder.
The condition has two main parts: obsessions and compulsions.

Obsessions
Obsessions are unwelcome thoughts, images, urges or doubts that
repeatedly appear in your mind; for example, thinking that you have been
contaminated by dirt and germs, or experiencing a sudden urge to hurt
someone.

These obsessions are often frightening or seem so horrible that you cant
share them with others. The obsession interrupts your other thoughts and
makes you feel very anxious.

I get unwanted thoughts all through the day, which is very

distressing and affects my ability to interact with others and
concentrate on my studies and work.

Compulsions
Compulsions are repetitive activities that you feel you have to do.
This could be something like repeatedly checking a door to make sure it is
locked or repeating a specific phrase in your head to prevent harm coming
to a loved one.

The aim of a compulsion is to try and deal with the distress caused by the
obsessive thoughts and relieve the anxiety you are feeling. However, the
process of repeating these compulsions is often distressing and any relief
you feel is often short-lived.

Getting ready for each day involves so much hand washing,

mental rituals, and doing things in the same order everyday...
Sometimes, I feel like staying in bed and avoiding the day.

4
 What is obsessive-compulsive disorder (OCD)?

The OCD cycle

The diagram below shows how obsessions and compulsions are connected
in an OCD cycle.

Obsessive
thought

Temporary
Anxiety
relief

Compulsive
behaviour

Living with OCD

Although many people experience minor obsessions (e.g. worrying
about leaving the gas on, or if the door is locked) and compulsions (e.g.
rituals, like avoiding the cracks in the pavement), these dont significantly
interfere with their daily lives, or are short-lived.

If you experience OCD, your obsessions and compulsions will cause you
considerable fear and distress. They will also take up a significant amount
of time, and disrupt your ability to carry on with your day-to-day to life,
including doing daily chores, going to work, or maintaining relationships
with friends and family.

Many people with OCD experience feelings of shame and loneliness

which often stop them from seeking help, particularly if they experience
distressing thoughts about subjects such as religion, sex or violence.
This means that many people try to cope with OCD alone, until the
symptoms are so severe they cant hide them anymore.

5
Understanding obsessive-compulsive disorder (OCD)

OCD is also known to have a close association with depression, and some
people find obsessions appear or get worse when they are depressed.
(See Minds booklet Understanding depression.)

What are the common signs of OCD?

Although everyone will have their own experiences, there are several
common obsessions and compulsions that occur as part of OCD.

Common obsessions
The three most common themes are: unwanted thoughts about harm
or aggression, unwanted sexual thoughts and unwanted blasphemous
thoughts. Obsessions often appear closely linked to your individual
situation. For example, if you are a loving parent, you may fear doing
harm to a child and if you are religious, you may have blasphemous
thoughts.

I have OCD harming thoughts and the compulsion to carry

them out, which is absolutely terrifying to say the least.

Some examples of obsessions include:

a fear of failing to prevent harm e.g. worrying that you have left
the cooker on and might cause a fire
imagining doing harm e.g. thinking that you are going to push
someone in front of a train
intrusive sexual thoughts e.g. worrying about abusing a child
religious or blasphemous thoughts e.g. having thoughts that are
against your religious beliefs
fear of contamination e.g. from dirt and germs in a toilet
an excessive concern with order or symmetry e.g. worrying if objects
are not in order
illness or physical symptoms e.g. thinking that you have cancer
when you have no symptoms.

6
 What are the common signs of OCD?

Common compulsions
Common compulsions include physical compulsions, e.g. washing or
checking, or mental compulsions, e.g. repeating a specific word or phrase.

I have to keep checking things three times and have to have

certain items on me to help me feel safe.

Some examples might be:

repeating actions e.g. touching every light switch in the house
every time you leave or enter the house
touching e.g. only buying things in the supermarket that you have
touched with both hands
focusing on a number e.g. having to buy three of everything
washing or cleaning e.g. having to wash your hands very frequently
in order to feel clean
checking e.g. reading through an email ten times before sending it
ordering or arranging e.g. keeping food organised by colour in
the fridge
repeating a specific word or phrase e.g. repeating someones name
in order to prevent something bad happening to them
praying e.g. repeating a prayer again and again whenever you hear
about an accident
counteracting or neutralising a negative thought with a positive one
e.g. replacing a bad word with a good one.

Avoidance
You might find that some objects or experiences make your obsessions or
compulsions worse, and you try to avoid them as a result. For example,
if you fear contamination, you might avoid eating and drinking anywhere
except in your own home. Avoiding things can have a major impact on
your life.

OCD means that I miss out on things because I [stay in] to try
to protect myself from the stress. Its sunny outside and I want to
go out, but I know I probably won't.

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Understanding obsessive-compulsive disorder (OCD)

What causes OCD?

There are different theories about why OCD develops, but none of these
theories have been found to fully explain every persons experience.

Dysfunctional beliefs
One theory suggests that OCD develops because of dysfunctional beliefs
and interpretations.

If you experience OCD, you might believe that you have more
responsibility for a situation than you actually do. Because of this, your
reaction may be out of proportion. For example, many people experience
sudden and intrusive thoughts, such as thinking that they might push
someone in front of a train on a crowded platform. Most people dismiss
it as a passing thought and do not believe they would actually do it.
However, if you have OCD, you are more likely to believe that you might
act on the thought. This makes you anxious or scared, and so you may
then develop a compulsion to try and prevent it happening. This could
start an OCD cycle (see p.5).

Personal experience
Some psychological theories suggest that OCD is caused by personal
experience. It is thought that if you have had a painful childhood
experience or suffered trauma or abuse, you might learn to use
obsessions and compulsions to cope with anxiety. However, this theory
does not explain why people who cannot point to any painful experiences
might experience OCD.

It could also be that one or both of your parents may have had similar
anxiety and shown similar kinds of behaviour (such as obsessional washing),
and you learned to use this type of behaviour as a coping technique.

Biological factors
Some biological theories suggest that a lack of the brain chemical
serotonin may have a role in OCD. However, experts disagree about what
that role is, and it is unclear whether a lack of serotonin causes OCD or

8
 How is OCD diagnosed?

is the effect of having the condition. Studies have also looked at genetic
factors and how different parts of the brain might be involved in causing
OCD, but have found nothing conclusive.

However, biological theories do not provide any explanation for how the
condition develops differently in different people; for example, why one
person might develop a contamination obsession while another develops
an obsession about harming.

Some experts have noted that some children seem to develop OCD
symptoms very suddenly after having a streptococcal (or strep) infection,
such as strep throat or scarlet fever. However, it is currently not known
why this might occur and no research has yet been able to identify a
physical cause to explain the link.

How is OCD diagnosed?

If you are concerned that you have OCD, and you want to seek
professional help, the first step would normally be to visit your GP.
Your GP can provide an assessment and diagnosis, and help you
access appropriate treatment.

If you visit a doctor to talk about OCD, they are likely to ask you direct
questions about possible symptoms. For example:
Do you wash or clean a lot?
Do you check things a lot?
Is there any thought that keeps bothering you that youd like to get
rid of but cant?
Do your daily activities take a long time to finish?
Are you concerned about putting things in a special order or do you
find mess very upsetting?
Do these issues trouble you?
How are they affecting your everyday life?

A doctor will then consider your answers against a list of medical criteria
in order to make a diagnosis. If you receive a diagnosis of OCD, it should

9
Understanding obsessive-compulsive disorder (OCD)

also say how severe your OCD is; for example, if you have mild, moderate
or severe OCD.

It can be extremely difficult to discuss your experiences with a doctor,

particularly if you experience distressing thoughts about issues such
as religion, sex or violence. However, it is important to try and talk as
honestly as you can, so your GP can suggest the right type of help for
you.

If you find it difficult talking about your OCD, you may find it useful to
prepare beforehand. You could think about how you would answer the
questions on p.9 and write down the answers to take with you. Then if
you start to feel embarrassed or overwhelmed when you are with your
GP, you can refer to your notes or even hand them to the doctor.

10
 What treatments are available?

What treatments are available?

Before you have any treatment, your doctor should discuss all your
treatment options with you, and your views and wishes should be taken
into account.

NICEs stepped model

If you access help on the NHS, your treatment should be in line with
NICE (National Institute for Health and Care Excellence) guidelines.
NICE recommends stepped treatment for OCD. This means that you
should receive different types of treatment depending on how severe
your symptoms are and how you responded to any previous treatment.
The diagram below is adapted from NICEs guidelines (see NICE in Useful
contacts on p.20).

Mild OCD Moderate OCD Severe OCD

symptoms symptoms symptoms

Low intensity CBT More intensive CBT Intensive CBT and

(up to ten hours of or treatment with medication
therapy, in a group or antidepressant
by telephone, or with medication Referral to specialist
the support of self- OCD service
help material) Possible referral to
community mental
health team (CMHT)

If you dont If you dont

respond to respond to
treatment treatment

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Understanding obsessive-compulsive disorder (OCD)

However, the treatments recommended in the NICE guidelines are not

appropriate for everyone. There are a number of options available to
treat OCD and different things work for different people. You may find
that a combination of approaches is most helpful for you, and different
approaches may help you at different times.

Cognitive behaviour therapy (CBT)

CBT techniques helped me to see the intrusive thoughts for
what they are, and put them in their place.

Cognitive behaviour therapy (CBT) is a talking treatment which aims to

identify connections between your thoughts, feelings and behaviour. It
aims to help you develop practical skills to manage any negative patterns
of thinking or behaviour that may be causing you difficulties. It can be
done one-to-one, or in a group. There is considerable evidence to suggest
that this therapy is especially effective in dealing with OCD.

The behavioural element (also known as Exposure Response Prevention

ERP) is strongly recommended for treating OCD. ERP works by
helping you to confront your obsessions and resist the urge to carry out
compulsions. The aim is to help you feel less anxious about obsessive
thoughts over time, and make you less likely to engage in compulsive
behaviour. For example, if you fear that you will harm someone and avoid
sharp objects as a result, you might build up to a therapy session where
you hold a knife while sitting in a room with other people.

This technique needs to be carefully managed to avoid causing distress

and anxiety, so it is important that you understand the treatment fully and
feel comfortable with your therapist.

It's hugely frustrating and exhausting trying to break out of

patterns that you know aren't helpful or healthy. It can feel hopeless.
But by challenging the behaviours, thoughts or compulsion you can
eventually achieve fresh change that seemed impossible.

You are entitled to receive free CBT on the NHS, and your GP should be
able to refer you to a local practitioner. However, waiting times for talking
12
 What treatments are available?

treatments on the NHS can be long. If you feel that you dont want to
wait or that you would like more support than is being offered, you may
choose to see a therapist privately. The British Association for Behavioural
and Cognitive Psychotherapies maintains a register of accredited CBT
therapists. (See Useful contacts on p.20 and Minds booklet Making sense
of cognitive behaviour therapy.)

Medication
Some people find drug treatment helpful for OCD, either alone or combined
with talking treatments, such as cognitive behaviour therapy (CBT).

Ive been on meds for the last three years and my OCD is so
much more controllable.

Before taking any medication, it is important to read the patient

information leaflet (that comes with the medicine) and discuss possible
benefits and side effects with your doctor.

Antidepressants
The drugs prescribed most commonly are SSRI antidepressants, such
as fluoxetine (Prozac), fluvoxamine (Faverin), paroxetine (Seroxat),
citalopram (Cipramil) and sertraline (Lustral). These drugs are all
recommended by NICE for the treatment of OCD. These drugs may have
side effects, 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. This should normally
only be prescribed if an SSRI antidepressant has already been tried and
not been effective. The side effects of clomipramine can include a dry
mouth, blurred vision, constipation, drowsiness and dizziness. (For more
information, see Minds booklet Making sense of antidepressants.)

Tranquilisers
If you are experiencing very severe anxiety as a result of OCD, you may
be offered tranquillising drugs, such as diazepam (Valium). This type of

13
Understanding obsessive-compulsive disorder (OCD)

medication should only be used for short periods of treatment because

of the risk of addiction. The side effects of tranquilisers can include
drowsiness, confusion, unsteadiness and nausea. (For more information,
see Minds booklet Making sense of sleeping pills and minor tranquillisers).

Beta-blockers
Beta-blockers are occasionally given to people to treat the immediate
symptoms of severe anxiety. They dont treat the anxiety itself, but act
on the heart and blood pressure to reduce physical symptoms, such
as palpitations. The beta-blocker most commonly used for anxiety is
propranolol (Inderal). The main side effects include a slow heartbeat,
diarrhoea and nausea, cold fingers, tiredness and sleep problems.

Neurosurgery for mental disorder

Neurosurgery (previously known as psychosurgery) is surgery on the
brain. It is not recommended for treating OCD, but is very occasionally
offered in severe cases, when other treatments have been unsuccessful.
Neurosurgery is strictly regulated under the Mental Health Act, and cant
be given without consent. (See Minds online booklet Making sense of
neurosurgery for mental disorder for more information.)

Community mental health and social care

If your OCD is severe or complex, your GP may refer you to a community
mental health team (CMHT). A CMHT is usually made up of range of
professionals, such as psychiatrists, psychologists, social workers and
occupational therapists. The team can offer medication, basic counselling or
other mental health treatments like cognitive behaviour therapy (CBT). They
should also be able to help with you with wider issues you have as a result
of your OCD, such as difficulties around housing, benefits or everyday living.

Even if you are not referred to a CMHT, or if you feel you are not
receiving the support you need, you may be entitled to have a social care
assessment to see if you are eligible for social care support. For more
information, see Minds online booklet The Mind guide to community-
based mental health and social care.

14
 How can I help myself?

Specialist OCD services

If you require more intensive support, it is recommended that you are
referred to a specialist OCD service in your area. However, in reality,
access to specialist services across the country is patchy and you may
need to travel outside your local area.

If you feel you are not getting access to the treatment you require, you
may find it useful to have an advocate. This is someone who can support
you and speak up for you, so you can get the help you need. You can find
an advocate by contacting your local Patient Advice and Liaison Service
(PALS) via NHS Choices. Some local Minds also run advocacy services.
(See Useful contacts on p.20)

How can I help myself?

Treatment of OCD often includes a combination of strategies, including
self-help. The following suggestions are some ideas you could try to help
you manage your OCD.

Self-help materials
Some people use self-help books, computer programmes or websites to
help manage their OCD. Many self-help materials are based on cognitive
behaviour therapy (CBT) principles (see p.12), which have been shown to
be particularly effective in treating OCD.

OCD UK (see Useful contacts on p.20.) has a list of popular self-

help books on their website, and there are several computerised CBT
programmes available for free or via prescription from your GP.

There are many self-help resources available, and you may have to try
a few before finding one that is right for you. You may decide to use
materials alongside professional help, or you may use them to develop
your own coping strategies.

15
Understanding obsessive-compulsive disorder (OCD)

Peer support groups

A self-help, or peer support group, offers an opportunity to meet up with
people who have gone through the same sort of experiences as you. It
can help you feel less isolated and give you and other group members a
chance to share how you cope with your feelings and experiences.

You can also access peer support groups online, through forums, social
media sites or online communities. While online peer support can be
extremely helpful, its important to remember that you dont always
know who youre talking to, so you should think carefully about what
information you want to share. See Minds online booklet How to stay safe
online for tips.

You can find details of support groups and online peer support on the
OCD UK and OCD Action websites (see Useful contacts on p.20).

Relaxation and mindfulness techniques

Learning a relaxation technique wont help you resolve obsessive thoughts
or compulsions, but it may help you deal with anxiety that you experience
as a result of your OCD. Relaxation techniques can teach you:

how to improve your breathing to reduce tension

p  hysical exercises that relax your muscles
action plans to help you progress from coping with non-stressful
situations to those that you find difficult.

For local relaxation classes, search the internet, or contact your local
library or GP. Also see Minds booklet How to manage stress and leaflet
Mind tips for better mental health: relaxation.

Some people may also find mindfulness techniques helpful to manage

unwanted or intrusive thoughts and reduce anxiety. Mindfulness is a
way of paying attention to the present moment, using techniques like
meditation, breathing exercises and yoga. Be Mindful has details of local
mindfulness classes around the UK. (See Useful contacts on p.20.)

16
 How can I help myself?

Physical activity
Doing some regular physical activity, whether it is going for a short
walk or playing a team sport, can help improve your mental wellbeing
particularly if you do it outside. Exercise releases feel-good hormones and
doing something active can distract you from unwanted thoughts. See
Minds booklet How to improve and maintain your mental wellbeing and
the leaflet Mind tips for better mental health: physical activity.

Talk to someone you trust

Trying to hide my OCD led to stress, which made my condition
worse. I'm more open about it now and my friends and colleagues
are also more aware.

Talking about OCD isnt easy. But if you can manage to talk to someone
you trust about your condition, it could help you feel it is less frightening,
and make you feel less isolated. It may also help other people understand
your OCD behaviour and how they can help you.

Plan for a crisis

You may want to make a crisis plan, or advance statement, to tell people
what you want to happen if you are in crisis. This can help reduce stress
and address any worries about what will happen to you or your family if
you become ill. (See Minds booklet The Mind guide to crisis services for
more information on how to plan for a crisis.)

17
Understanding obsessive-compulsive disorder (OCD)

What can friends and family do to help?

This section is for friends and family who want to support someone they
know with OCD.

Listen and try to understand

Friends or family can help a lot by accepting the feelings of the person
with OCD and knowing that they find it difficult to cope with them. Finding
out about the condition and showing you understand what they are going
through can be a very important source of support.

It is helpful if you can understand that it can be particularly difficult

for someone experiencing the symptoms of OCD to acknowledge their
thoughts, especially if they are shameful or embarrassing.

Support them in getting help

Living with my daughter who has OCD is an emotional roller
coaster but having found the right medication and therapist, she
is coming on in leaps and bounds.

If the person you know with OCD is working to a self-help programme,

either on their own or with a therapist of some kind, you might be able to
support them with this, or go to treatment sessions with them.

Directing your friend or family member to information materials or

personal stories about other peoples experiences can also help them
understand their condition and make them feel less alone.

Work out how to deal with compulsions

It can be distressing to watch someone you love carrying out compulsive
behaviour. However, trying to prevent your friend or family member from
carrying out compulsive behaviour is often counter-productive and tends
to increase their anxiety. Your friend or relative might ask you to go along
with their compulsions; for example, not going into the bathroom until

18
 What can friends and family do to help?

it has been cleaned. This can be disruptive and does not always help to
relieve their anxiety.

There is no right or wrong answer about how you to deal with this, but
talking about it together might help. If your friend or family member
is getting professional help, the professional responsible for their care
may be able to advise you how best to deal with this in your individual
situation.

Get support for yourself

It can be distressing to be close to someone experiencing OCD,
particularly if you are caring for them. You might find it useful to talk to
other people in the same situation as you, and to find out more about
these complex problems. You can find details of support groups and
organisations that provide information on OCD, including information for
carers, in Useful contacts on p.20.

19
Understanding obsessive-compulsive disorder (OCD)

Useful contacts
Mind Carers UK
Mind infoline: 0300 123 3393 advice line: 0808 808 7777
(Monday to Friday 9am to 5pm) web: carersuk.org
email: [email protected] Independent Information and
web: mind.org.uk support for carers.
Details of local Minds and other
local services, and Minds Legal MoodGYM
Advice Line. Language Line is web: moodgym.anu.edu.au
available for talking in a language Provides free computerised CBT.
other than English.
NHS choices
Anxiety UK web: nhs.uk
tel: 08444 775 774 Information about OCD and where
web: anxietyuk.org.uk to find a Patient Advice Liaison
Support, help and information for Service (PALS) office in your area.
those with anxiety disorders.
NICE (The National Institute for
Beating the blues Health and Care Excellence)
web: beatingtheblues.co.uk web: nice.org.uk
Provides free computerised CBT Provides guidance on health and
with a referral from a GP. social care.

British Association for Behavioural OCD Action

and Cognitive Psychotherapies tel: 0845 390 6232
(BABCP) web: ocdaction.org.uk
tel: 0161 705 4304 Information and support for people
web: babcp.com with experience of OCD, and their
Can provide details of accredited friends, family and carers.
CBT therapists.

20
 Useful contacts

OCD-UK
tel: 0845 120 3778
web: ocduk.org
Information and advice for people
with OCD and their friends, family
and carers.

Samaritans
Freepost RSRB-KKBY-CYJK
Chris, PO Box 90 90
Stirling FK8 2SA
helpline: 08457 90 90 90
email: [email protected]
web: samaritans.org
24-hour support for anyone
experiencing distress, despair or
suicidal thoughts.

21
Notes
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This booklet was originally written by Beth Murphy

This edition was written by Celia Warin

First published by Mind 2011

This edition published by Mind 2013 Mind Mind
To be revised 2016 (National Association for Mental Health)
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