OCD in adults

Compulsive thoughts are:

• unwanted thoughts, impulses or mental images
• often frightening and are about dreadful things that might happen
• unpleasant and experienced as intrusive. They often produce anxiety or disgust.

Compulsive actions are:

• repeated actions (for example handwashing or checking behaviour) or mental rituals (for example praying, counting or repeating words) that a person feels compelled to perform
• actions performed for the purpose of reducing discomfort or to prevent something dreadful from happening.

In some people with OCD, there are no compulsive thoughts behind the actions, but they experience extreme discomfort if they are unable to perform their compulsive actions.

Most OCD sufferers know well from their common sense that their compulsive thoughts and actions are excessive or unreasonable – at least some of the time. But when they are in the middle of a situation that triggers OCD, their compulsive thoughts often feel realistic and their compulsive actions necessary.

A minority of OCD sufferers are convinced that their thoughts are right and believe their compulsive actions are reasonable. They are unable to distance themselves rationally from their thoughts.

Many people with OCD perceive their compulsive thoughts and actions as absurd and embarrassing. They therefore find it embarrassing to disclose them to others. Some people with OCD therefore go around for years with obsessive-compulsive symptoms that they keep hidden from others. This means that many people with OCD do not get the right diagnosis and thus the right help.

OCD often begins in childhood or early adulthood. Approximately 80% develop OCD before they turn 25.

The symptoms often develop gradually. This means that mild obsessive-compulsive symptoms gradually increase in degree of severity. Other times, the symptoms occur suddenly, virtually overnight.

Many relatives and outsiders may find it difficult to understand that the OCD sufferer cannot just “pull himself or herself together” and stop performing the compulsive actions. But going against the compulsive symptoms often induces so much anxiety and discomfort that many people have given up the struggle by the time they come to be examined and treated.

Today, OCD is regarded as a neuropsychiatric disorder, in which a disturbance in the brain’s neurotransmitters, mainly serotonin, plays an important part. Effective treatment shows a normalisation of this disturbance. Brain scans show that certain areas and structures of the brain are often affected. In rare cases, OCD may be due to brain infections.

Many OCD sufferers have a genetic predisposition for developing the disorder. There is a higher risk of developing OCD if someone in the family has it and especially if there is early onset of the disorder.

Some people with OCD have particular personality traits in the form of a strong sense of tidiness, accuracy or excessive caution. However, a lot of OCD sufferers do not have these personality traits. 

Although all the evidence points to OCD being predominantly a genetic, biological and neurological disorder, social and psychological factors are also involved. Different types of stress can contribute to the development of OCD. Stress can also aggravate existing symptoms.

For example, unfortunate patterns of communication or a negative atmosphere in the family may contribute to maintaining or even aggravating the symptoms. It is therefore often important also to incorporate social and psychological aspects in the treatment and to involve the family and other key persons.

People with OCD exhibit many different compulsive thoughts and actions.

Some OCD sufferers have a single type of symptoms, but most have several different types. Over time, the obsessive-compulsive symptoms may change content and nature.

To be classed as OCD, the symptoms must involve suffering or affect everyday functions. Compulsive thoughts may have many different themes, and compulsive actions take many different forms. Below you can read about some of the most frequent types. 

Here you typically have an excessive fear of getting dirty or contracting diseases. It may also be fear of accidentally spreading dirt or passing on bacteria to other people.

This often results in compulsive actions in the form of excessive hygiene or cleaning.

Checking behaviour is a type of compulsive action that may occur in connection with virtually all types of compulsive thoughts. 

An OCD sufferer with checking behaviour checks certain things over and over again. This may, for example, be door locks, electrical appliances, whether he or she has forgotten/lost something, whether others have been injured, etc.

For some OCD sufferers, this makes it virtually impossible to leave their apartment or house because they are unable to conclude their checking rituals.

Many OCD sufferers are anxious about doing harm to other people or to themselves, either intentionally or negligently. Others are plagued by compulsive thoughts about sexual acts or themes that they perceive as immoral or repulsive.

OCD sufferers who are tormented by these compulsive thoughts often try to avoid situations that trigger these thoughts.

The vast majority have mental rituals. This may, for example, be trying to control their thoughts or trying to force the thoughts out of their head.

Many are afraid that they will act on their thoughts and many keep them secret because they are ashamed of thinking these thoughts. 

Here, the OCD sufferer is controlled by excessive, strict and rigid rules about what is right from a religious or ethical point of view. Often, he or she will try to avoid even the tiniest deviation from these rules.

Hoarding or collecting mania is characterised by the OCD sufferer collecting things excessively, or having difficulty throwing things out. This may, for example, be things of sentimental value, or things that the OCD sufferer thinks he or she might need one day. 

Compulsive thoughts about symmetry or accuracy are characterised by an excessive compulsion to arrange things symmetrically or in a particular order.

Some people feel extremely uncomfortable if there's a clutter or disorder. Others have compulsive thoughts about something bad happening to them personally or to the people closest to them if things are not arranged correctly.

Many OCD sufferers are tormented by intrusive unpleasant mental images or ‘inner films’ with unpleasant image sequences. 

This may, for example, be excessive avoidance behaviour or rituals associated with contact with superstitious phenomena, for example black cats, cemeteries, certain dates, numbers and the like.

Somatic compulsive thoughts are exaggerated thoughts about physical illness.

They often result in the OCD sufferer going excessively to the doctor, continuously checking his or her body for signs of illness or excessively seeking information online about the illness in question.

Repetitive rituals involve repetitions of ordinary everyday actions, such as switching lights on and off, opening and shutting the door or going back and forth across the doorstep.

Some repeat the actions a certain number of times. Others repeat the actions until it feels right. 

Mental compulsive actions are compulsive actions which are carried out inside the OCD sufferer’s head and which are not visible to the outside world. This could, for example, be saying prayers, reciting rhymes, trying to suppress or change unwanted thoughts or counting rituals.

Reassurance seeking is often used by OCD sufferers to obtain reassurance from others that the things they fear will not happen, or that what they have done is good enough. Often, the same questions are asked over and over again. This type of compulsive action may be a great burden for relatives.

Compulsive thoughts can also be about other themes and the compulsive behaviour can assume other forms than those referred to here.

Almost any kind of thought or behaviour can develop into a obsessive-compulsive symptom. Within the different types of symptoms, the disorder manifests itself in widely divergent ways in the individual person.

Some OCD sufferers become socially isolated because they have difficulty being around other people. They might have to wash their hands many times a day and they are always unsure about whether they have washed them thoroughly enough.

Others have difficulty leaving their home because they are afraid of doing things they fear, or because they are afraid of revealing some of the obsessive-compulsive symptoms they otherwise try to keep hidden. 

An OCD diagnosis is made based on in-depth consultations with a doctor or psychologist and an examination of the person in question. Special questionnaires, prepared with a view to diagnosing OCD, are often used. In some cases, the person’s doctor can make the diagnosis.

In other cases, it may be a difficult matter that needs referral to a specialist in adult psychiatry, or to an outpatient psychiatric department with specialised knowledge of this field. The reason for the difficulties may be that the OCD sufferer finds it hard to talk about his or her symptoms, or because the symptoms may be highly different and resemble symptoms of other mental disorders.

Psychotherapy will most often take the form of cognitive behavioural therapy. Cognitive behavioural therapy is the best documented psychotherapy treatment. It is recommended for children, adolescents and adults with OCD.

Some OCD sufferers will need supplementary medication, while cognitive behavioural therapy alone has good effect in many ODC sufferers.

The treatment usually starts with information about OCD. This part of the treatment is called psychoeducation. It leads to a common understanding of the OCD disorder and the mechanisms that maintain it in the individual person. It also introduces the thinking underlying the methods used in the treatment. It is important for the OCD sufferer to have some understanding of why the treatment is designed as it is, because effort is required to get the best out of the treatment.

At the start of the treatment, a list of problems and goals is prepared jointly with the therapist to establish a clear agreement about what to work towards.

In the treatment, the therapist works with a number of cognitive methods aimed at challenging the OCD sufferer’s disaster mindset. During the sessions, the OCD sufferer works with the therapist to try out different ways of thinking, supported by small home assignments. 

Other behavioural therapy methods are also employed for the purpose of challenging the inappropriate compulsive behaviour (compulsive actions, avoidance behaviour, etc.) in which the OCD sufferer often becomes trapped.

Many find that their compulsive actions and avoidance behaviour are necessary to control the unpleasant compulsive thoughts and disaster mindset, to prevent dreadful things from happening or to reduce the discomfort. In fact, though, the compulsive behaviour contributes to reinforcing the compulsive thoughts and the discomfort and thus to maintaining the symptoms.

Exposure and response prevention

The most important behavioural therapy method for OCD are exposure and response prevention. During exposure, the OCD sufferer is exposed, gradually, cautiously and in small steps, to the things and situations that trigger obsessive-compulsive symptoms. This is done in combination with response prevention, which means that the person refrains from carrying out the compulsive actions.

Through this, the OCD sufferer learns that the anxiety or discomfort will recede on its own without the need to engage in compulsive behaviour, and he or she gains specific experience that the catastrophic thoughts are exaggerated and unrealistic.

Some people with OCD are afraid to seek cognitive behavioural therapy because they know it means exposure and response prevention. It is important to know that the treatment is always arranged in collaboration between the OCD sufferer and the therapist. The OCD sufferer is never forced into exposure, and the therapist never prevents the OCD sufferer from performing his or her compulsive behaviour.

Home assignments are a very important part of the treatment. Here, the OCD sufferer transfers what he or she has learned in the treatment to his or her daily life. This is why, from the very outset, the person needs to be prepared to set aside plenty of time for home assignments between the sessions. Home assignments may consist of exposure and response prevention assignments or use of other methods.

The OCD sufferer’s symptoms may have a major impact on the people around him or her. Often, the family or other people close to the OCD sufferer have become actively involved in the compulsive actions. Often, therefore, it is important to involve the whole family, spouse or other people close to the OCD sufferer in the treatment.

Cognitive behavioural therapy is usually recommended as the first choice in the treatment of OCD. However, in more severe cases of OCD, or where cognitive behavioural therapy has not been effective enough, it may be necessary to combine counselling with medication.

Antidepressants are the principal medication used and they are effective in the treatment of OCD. This medication was originally developed to treat depression. 

Types of drugs

The most commonly used forms are SSRIs. SSRI stands for selective serotonin reuptake inhibitor. The name is derived from the chemical effect of the substance.

There are several different types of SSRIs. If one medicinal product is not sufficiently effective, or has unacceptable side effects, there may be good reason to try another medicinal product.

In addition to SSRIs, clomipramine is also used in the treatment of OCD. It is an older form of antidepressant.

Sometimes, the addition of a small dose of antipsychotic medication can be effective when combined with an antidepressant.

Unfortunately, it may take a long time for the medication to work and it takes patience to wait for the treatment to have an effect. However, it is important to test one medicinal product thoroughly before possibly switching to another. It is also important to take a sufficiently high dose. 

The medication rarely results in the OCD symptoms disappearing completely. However, many describe that their compulsive thoughts become less intrusive and that their urge towards compulsive behaviour diminishes.

Side effects

Some, but by no means all, experience side effects from the medication. Many side effects disappear after a few weeks of treatment, and the remaining side effects are most often mild. 

However, some experience severe and persistent side effects. Here, a switch to another medicinal product may be necessary. Any side effects disappear when the OCD sufferer stops taking the medication. Neither SSRIs, antidepressants nor antipsychotics lead to physical dependence.

If the pharmacological treatment has an effect, it is recommended that it be continued for at least six months to a full year after the OCD sufferer’s condition has improved. After this, the OCD sufferer can slowly taper off the medicine by agreement with his or her doctor.

Tapering off

It is important to taper off the medication by agreement with a doctor and over a period in which the OCD sufferer is doing well and is not exposed to external strains and stresses.

Some experience recurrence in connection with tapering off the medication. It may then be an advantage to know the cognitive behavioural therapy methods and tools. They can then be used if there are signs of recurrence. Some people with OCD may need life-long medication.

• Realise that you are not alone. Approximately 1 in 50 persons suffers from OCD worldwide. You can meet other people who have OCD through, for example, the Danish OCD Association.

• You are not going mad, and there is nothing shameful about having OCD. Unfortunately, many people are embarrassed about their symptoms and try to conceal them from those around them, which is a pity, because OCD is a treatable disorder.

• Learn about your disorder. Many have a false impression of the causes and maintenance mechanisms of the disorder. This can lead to attempts to combat the obsessive-compulsive symptoms instead serving only to aggravate them.

• Seek treatment. There are effective forms of treatment available today, so do not live with untreated OCD. Remember: you will never be forced to start taking medication or to undergo exposure and response prevention. Before deciding against a treatment option, make sure you have been given sufficient information about both medication and therapy so that you can make an informed choice.

• Be open and honest with your therapist. It is important that you talk about your symptoms with your doctor/psychologist to ensure the best treatment.

• Follow the treatment – even if, especially at the start, the side effects of the medication can be bothersome – and even if cognitive behavioural therapy may be unpleasant for a while.

• Try to be active and participate in activities with other people. The more you confront your own anxiety and try to prevent yourself from carrying out compulsive actions, the more control you will gain over your symptoms.

• It can be useful for relatives to learn about OCD because this helps dispel any myths and avoid a feeling of guilt, self-reproach and reproach from the OCD sufferer. It is important to remember that obsessive-compulsive symptoms have nothing to do with a lack of willpower. It can be a great relief to think of OCD as an uninvited guest who no one, not even the OCD sufferer, has invited in.

• It is important for you, as a relative, not to become involved in the OCD sufferer’s compulsive thoughts and actions and not to adapt your own behaviour to the disorder. Like the OCD sufferer’s own compulsive actions, accommodating behaviour by relatives helps maintain and aggravate the disorder. Instead, try to focus on normal things in the time you spend with the OCD sufferer in order to reduce the impact of the obsessive-compulsive symptoms.

• As a relative, you can support the OCD sufferer by encouraging him or her to seek treatment. Some OCD sufferers refuse to recognise that they have a problem or to get treatment. In that case, you have to accept that this is their own choice, and that you yourself must try to lead as normal a life as possible. You cannot force someone to undergo treatment, but, as a relative, you can stop your own accommodating behaviour so that you are not unwittingly part of the maintenance mechanisms of the disorder.

• If the OCD sufferer has children who are affected in one way or another by their parent’s OCD, you should give the child as much help as possible so that he or she is affected as little as possible. Perhaps involve a professional such as a doctor or psychologist who may be able to support the child.
• It is important to look after yourself and take care of your own needs. Being close to someone who suffers from OCD can be challenging. Compulsive symptoms often directly or indirectly affect friends and family, and it can be unpleasant and frustrating to witness someone you care about suffer. Maintain as normal a routine as possible, and continue to lead your own life, with normal activities and social relationships. If you, as a relative, do not look after yourself, there is a risk that you will yourself develop a strain reaction or a depression requiring treatment. If this is the case, seek professional help. Some people may benefit from talking to other relatives. This can be arranged through the Danish OCD Association and other patient associations that provide network groups for both OCD sufferers and relatives.