Dissociative disorders

About dissociative disorders

What is dissociation?

Your sense of reality and who you are depend on your feelings, thoughts, sensations, perceptions and memories. If these become ‘disconnected’ from each other, or don’t register in your conscious mind, your sense of identity, your memories, and the way you see things around you will change. This is what happens during dissociation.

Everyone has periods when disconnections occur naturally and, usually, unconsciously. We often drive a familiar route, and arrive with no memory of the journey or of what we were thinking about. Some people even train themselves to use dissociation to calm themselves, or for cultural or spiritual reasons. Dissociation is also a defence mechanism that can help us survive traumatic experiences.

What was happening around me was like a scene from a war movie. I was observing it, not participating in it. I didn’t feel frightened. It all seemed so strange and unreal.

- Bomb attack survivor

The bomb survivor, quoted above, is describing a normal dissociative response, which allowed her to focus on the things she needed to do to survive, including remembering where the nearest exit was.

Dissociation can also occur as a side effect of some drugs, medication and alcohol.

Are there different forms of dissociation?

There are five types of dissociation, which are listed below. Occasional, mild episodes are part of ordinary, everyday life. Sometimes – at the time of a one-off trauma or the prolonged ‘identity confusion’ of adolescence, for instance – more severe episodes are quite natural.

Amnesia

This is when you can’t remember incidents or experiences that happened at a particular time, or when you can’t remember important personal information.

Depersonalisation

A feeling that your body is unreal, changing or dissolving. It also includes out-of-body experiences, such as seeing yourself as if watching a movie.

Derealisation

The world around you seems unreal. You may see objects changing in shape, size or colour, or you may feel that other people are robots.

The world around me seems unreal and alien, like a mist has descended and everything looks hazy and dreamlike; only I’m awake, so I can’t be dreaming.

- Survivor of derealisation

Identity confusion

Feeling uncertain about who you are. You may feel as if there is a struggle within to define yourself.

Identity alteration

This is when there is a shift in your role or identity that changes your behaviour in ways that others could notice. For instance, you may be very different at work from when you are at home.

What are the different types of dissociative disorder?

Dissociative disorders occur when you have persistent and repeated episodes of dissociation. These usually cause ‘internal chaos’ and may interfere with your work, school, social, or home life. However, some people apparently function well, which hides their distress.

Depersonalisation disorder

You will have strong feelings of detachment from your own body or feel that your body is unreal. You may also experience mild to moderate derealisation and mild identity confusion.

Dissociative amnesia

This is when you can’t remember significant personal information or particular periods of time, which can’t be explained by ordinary forgetfulness. You may also experience mild to moderate depersonalisation, derealisation and identity confusion.

Dissociative fugue

You may travel to a new location during a temporary loss of identity. You may then assume a different identity and a new life. You will experience severe amnesia, with moderate to severe identity confusion and often identity alteration.

Dissociative identity disorder (DID)

The most complex dissociative disorder. It’s also known as multiple personality disorder (MPD). This has led some to see it as a personality disorder, although it is not. The defining feature is severe change in identity. If you experience DID, you may experience the shifts of identity as separate personalities. Each identity may assume control of your behaviour and thoughts at different times. Each has a distinctive pattern of thinking and relating to the world. Severe amnesia means that one identity may have no awareness of what happens when another identity is in control. The amnesia can be one-way or two-way. Identity confusion is usually moderate to severe. It also includes severe depersonalisation and derealisation.

Our life is always challenging and frequently chaotic, confusing and distressing, even when we look and behave unremarkably.

- Survivor of dissociative identity disorder

Dissociative disorder not otherwise specified (DDNOS)

Each of the five types of dissociative response (see above) may occur, but the pattern of mix and severity does not fit any of the other dissociative disorders listed above.

Additional problems

You may experience other problems too, such as depression, mood swings, anxiety and panic attacks, suicidal tendencies, self-harm, headaches, hearing voices, sleep disorders, phobias, alcohol and drug abuse, eating disorders, obsessive-compulsive behaviour and various physical health problems. These may be directly connected with the dissociative problem, or could mean that you also have a non-dissociative disorder. In DID, these problems may only emerge when a particular part of the fragmented identity (an alter personality) has control of your behaviour, thoughts and feelings.

Many mental health problems, such as schizophrenia, bipolar disorder and borderline personality disorder, also have dissociative features.

Causes

What causes dissociative disorders?

Childhood abuse

The causes of dissociative disorders are complex. Studies show that a history of trauma, usually abuse in childhood, is almost always the case for people who have moderate to severe dissociative symptoms. But not all trauma survivors have a dissociative disorder, so the relationship is not one of simple cause and effect.

A fuller understanding comes from looking at your childhood relationship with your parents or guardians. If the relationship was insecure and you were abused, then you were, and are, more likely to use dissociation to protect yourself from the trauma. The combination of an insecure relationship, trauma and dissociation can result in a complex dissociative disorder.

Recent studies show differences in the brains of people with trauma-related dissociative disorders, but it is hard to know if this is a cause or effect.

A number of experts agree that the following factors have to be present for a person to develop the most complex dissociative disorders e.g. Dissociative identity disorder (DID), or DDNOS with features of DID:

• abuse begins before the age of five
• abuse is severe and repeated over an extended period
• the abused child has an enhanced natural ability to dissociate easily
• there is no adult to provide comfort; the child had to be emotionally self-sufficient.

Other theories

Some sceptics argue that DID does not occur naturally and that the symptoms are caused by poor therapy with vulnerable, suggestible clients.

Some have also suggested that DID is a North American phenomenon and should be viewed as a culture-specific diagnosis. But dissociative disorders have been identified and studied in many different countries and cultures.

Diagnosis

How common are dissociative disorders?

Dissociative disorders are likely to be more common than the current low rates of diagnosis suggest.

A British study used a standard dissociative disorders screening questionnaire and interviewed 59 mental health inpatients on an acute psychiatric unit. None of the patients had previously been diagnosed with a dissociative disorder. It found that 30 per cent experienced significant levels of dissociation and it’s probable that 50 per cent of this group had an undiagnosed dissociative disorder. People who are eventually diagnosed with Dissociative identity disorder (DID) or other complex dissociative disorder have often had several earlier misdiagnoses, such as schizophrenia, bipolar or borderline personality disorder. Others never have their dissociative disorder diagnosed. DID may be as high as one per cent in the general population.

Several factors may explain the low rates of diagnosed dissociative disorders.

How are dissociative disorders diagnosed?

Several questionnaires can be used to screen for and diagnose dissociative disorders. The most common are the Dissociative Experiences Scale (DES) and the Structured Clinical Interview for DSM-IV Dissociative Disorders (SCID-D). Research shows these are accurate tools which discriminate DID from other dissociative disorders and from other mental health problems. Clinicians who use these assessment tools should have specialist training and a good understanding of the dissociative disorders.

If you have experienced a combination of any of the symptoms opposite, you may need an assessment for dissociative disorders. For DID, the following are non-specific clues for diagnosis. They are not the only indicators (e.g. men can also have DID and it is seen in older people), but they are a useful guide for when to seek assessment for dissociative disorders.

• history of childhood abuse/trauma
• female
• age 20-40
• reporting ‘blank spells’
• hearing voices and/or believing there are external influences on the body and/or other unusual beliefs (apparently delusional thinking) and/or reports of other people’s thoughts intruding
• previous diagnosis or suspicion of borderline personality disorder
• previous unsuccessful treatment
• self-destructive behaviour
• no thought disorder.

Clinicians who have extensive knowledge and experience of working with dissociative disorders may be able to recognise them using clinical judgement alone.

Please note that dissociative states are a common and accepted feature of cultural activities or religious experience in many non-Western societies and are not regarded as a mental health problem.

Difficulty in diagnosing

• GPs and mental health professionals often receive insufficient training on dissociative disorders, so may not ask the right questions or consider the possibility of a dissociative disorder.
• Many signs and symptoms identified during routine mental health assessments (e.g. depression, anxiety, insomnia, self-harming, hearing voices) are common to other mental health problems more familiar to the clinician. Thus a standard assessment will often not identify a dissociative disorder.
• There is often confusion surrounding the term ‘multiple personality disorder’ (for DID). It can result in a diagnosis that is not valid, as the clinician may be looking for personality disorder symptoms instead of dissociative disorder symptoms.
• Until recently, clinicians did not routinely ask about history of childhood abuse and trauma at assessment. Also, even when asked, people may deny a history of abuse. One reason for this may be because they do not remember it (dissociative amnesia).

Behaviour

Almost everyone coping with dissociative difficulties tries to keep them hidden from others.

Effects

What are the effects of a dissociative disorder?

Dissociation can affect perception, thinking, feeling, behaviour, body and memory. So, if you experience a dissociative disorder you may have to cope with many challenges in life. The impact of dissociation varies from person to person and may change over time. How well a person appears to be coping is not a good way of telling how severely affected they are. For instance, few people with Dissociative identity disorder (DID) (see above) will switch rapidly and openly between identities, in the way portrayed on TV and film. Nor is the classic ‘Dr Jekyll and Mr Hyde’ shift of identity common.

The effects of dissociative disorder may include:

• gaps in memory
• finding yourself in a strange place without knowing how you got there
• out-of-body experiences
• loss of feeling in parts of your body
• distorted views of your body
• forgetting important personal information
• inability to recognise your image in a mirror
• a sense of detachment from your emotions
• the impression of watching a movie of yourself
• feelings of being unreal
• internal voices and dialogue
• feeling detached from the world
• forgetting appointments
• feeling that a customary environment is unfamiliar
• a sense that what is happening is unreal
• forgetting a talent or learned skill
• a sense that people you know are strangers
• a perception of objects changing shape, colour or size
• feeling you don’t know who you are
• acting like different people, including child-like behaviour
• being unsure of the boundaries between yourself and others
• feeling like a stranger to yourself
• being confused about your sexuality or gender
• feeling like there are different people inside you
• referring to yourself as ‘we’
• being told by others that you have behaved out of character
• finding items in your possession that you don’t remember buying or receiving
• writing in different handwriting
• having knowledge of a subject you don’t recall studying.

Be cautious about diagnosing yourself without the advice of a suitably experienced professional. First, call your GP, unless you are already a patient of the specialist mental health services. Ask your GP, care co-ordinator or psychiatrist to refer you to a professional aware of dissociation, for a full diagnostic assessment. Or, if this fails, look to the voluntary or private sector.

What can help?

What treatments can help?

For all dissociative disorders the aim of treatment and self-help is to increase the connections between feelings, thoughts, perceptions and memories, and to develop a sense of empowerment. This will make you feel more ‘whole’ and reduce the internal ‘chaos’ you may be feeling. In turn, this will lead to less disruption in work, social and home life. The International Society for the Study of Trauma and Dissociation gives guidelines for the treatment of Dissociative identity disorder (DID).

Talking treatments

It is important to look at underlying causes as well as the effects of the dissociative problems. So, although effective treatment for dissociative disorders may combine several methods, it always includes psychotherapy or counselling, usually over several years.

The therapist should be familiar with trauma work and ideally have experience of working with dissociation. However, it is the quality of the therapist-client relationship that is most important; and so inexperienced therapists may provide effective therapy if supervised by a professional who is experienced with dissociation. The therapist should be accepting of your experience; willing to learn how to work with dissociation and trauma; able to tolerate any level of frustration and extreme pain you may experience; and be prepared to work with you long term.

Getting such help through the NHS may depend on where you live and may not be always be easy to access, even after a dissociative disorder has been diagnosed. Those who have received appropriate NHS-funded help often report that it was only through their own persistence and/or with the help of someone else (an advocate). The short to medium-term therapy most commonly available from the NHS may not be effective in the long term for dissociative clients.

Appropriate low-cost or free therapy may be available through voluntary organisations.

Therapists in the private sector are another option if you can afford it – some offer fees based on your ability to pay.

See talking treatments and advocacy for more information.

Medication

There is no medication to treat dissociation. However, medication can help treat symptoms you may also be experiencing, such as depression, anxiety, or insomnia etc. Regular antipsychotic medication is not generally helpful.

In DID, medication should only be used when the targeted symptom is widespread throughout the system of identities and/or is experienced by the dominant personality state(s) who manage everyday life. It is important to monitor dosage and effects carefully.

Care in the community

Supportive and creative community mental health services can help you to cope with the everyday effects of dissociation and related problems that impact on daily life. The workers don’t necessarily have to be professionally qualified, but they do need to know about dissociation and how to respond to you if you are in a dissociative state. Social services’ Direct Payments – which pay you an amount to provide for your own social support and care – can be very effectively used by some people with dissociative disorders.

Crisis intervention

If you are suicidal or otherwise unable to stay safely in the community, a GP, community mental health worker or out-of-hours mental health crisis worker may make a referral for admission to hospital or for intensive care from a home treatment team. (This is a community-based crisis-response service that can provide support in your own home as an alternative to hospital admission.) Alternatively, you may ask for help at a hospital accident and emergency department. Mainstream crisis intervention services are unlikely to understand or acknowledge the dissociative experience, but they may be the only option to help you survive through the crisis.

Before a crisis occurs, it’s a good idea to make a personal crisis plan with the help of a care co-ordinator, friend or other supporter. You can make an Advance Decision to refuse specific treatment or an Advance Statement of your wishes and feelings. Think about things that help you avoid going into crisis, how you would like to be treated in crisis (e.g. if you prefer female or male workers), and what helps you survive if a crisis does occur. You can also write down something about what you are like when you dissociate, so that others will know more about how they can best help you.

You can get a DID crisis card from PODS.

How can I help myself?

Recovery usually requires active self-help, and so it’s common for therapists to set ‘homework’ that includes a variety of self-help techniques and exercises. If you want to try self-help techniques on your own, remember that dissociation can complicate this. In DID, for instance, the identity who self-harms must be involved in any self-help activity for these behaviours.

Keeping a journal is one way to help improve connections, and (in DID) awareness and co-operation between identities. It can include the writings or artwork from any aspect or identity of your dissociated self.

Imaging or visualisations is a way to use your imagination to create internal scenes and environments which help you stay safe and contain difficult feelings and thoughts. With practice, you can also use this to bring different identities together to make co-operative decisions.

Grounding techniques, which keep you connected to the present, can help you avoid feelings, memories, flashbacks or intrusive thoughts that you can’t yet cope with. The many techniques include breathing slowly, walking barefoot, talking to someone and sniffing something with a strong smell.

Planning for child, adolescent and other identities to have control, at times and in places that are safe, is essential self-help for people who have DID. This is time for them to do things they like, to have experiences they were denied during an abusive childhood.

You may wish to develop coping strategies for everyday challenges. For instance, a person who loses time, due to dissociation, may decide to wear a watch with the day and date on it.

Many people have found that reading about the life and experiences of survivors with similar problems has helped them.

Support groups

Sharing experiences with others who have the same problems can provide emotional release and practical assistance, provided that the support group is well organised and maintains very clear boundaries. Some dissociative survivors have reported that abuse self-help or support groups which include both people with complex dissociative disorders and people without this experience have been problematic.

What can friends or family do to help?

This section is for friends or family who wish to support someone they know who has dissociative disorder.

Partners, family and friends can have a key role to play in recovery.

Below are some ways you can help.

• Learn as much as possible about dissociative disorders.
• Listen with acceptance to your dissociative friend or relative, if they want to tell you about their experience.
• Don’t expect them to always know what you can do to help, or to be able to tell you.
• Be consistent, honest and non-judgemental.
• Be cautious about touching and intimacy – ask them what is OK.
• Do offer to help with, or take over, everyday tasks to lighten the pressure.

Remember: don’t neglect yourself. Talking treatments may help you cope with the vast array of feelings brought out by living with a dissociative survivor.

Most people with dissociative disorder who have been correctly diagnosed and provided with appropriate treatment are likely to make significant progress: many report full recovery and most others have been able to take more control over their lives and reduce the frequency of crises.

Useful contacts

Clinic for Dissociative Studies
web: clinicds.co.uk

Directory and Books Services (DABS)
tel: 01709 860 023
web: dabsbooks.co.uk
Support for those concerned with abuse and sexual violence.

European Society for Trauma and Dissociation
web: estd.org/resources.html

First Person Plural
web: firstpersonplural.org.uk
Support and information for people who experience complex dissociative distress conditions, their family, friends and professional allies.

International Society for the Study of Trauma and Dissociation
web: isst-d.org 

PODS (Partners of Dissociative Survivors)
web: pods-online.org.uk 
Information and crisis cards for people who suffer from a dissociative disorder.

Pottergate Centre for Trauma and Dissociation
web: dissociation.co.uk

Sidran Institute for Traumatic Stress Studies
web: sidran.org 

The Survivors Trust
tel: 01788 550 554
web: thesurvivorstrust.org 
Lists local specialist organisations dealing with sexual abuse and violence.

Trauma and Abuse Group (TAG)
web: tag-uk.net
Details of UK organisations providing or listing counsellors or therapists.

Published 2011
To be revised 2013
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