What Is It Like To Have Dissociative Identity Disorder?

DSM-5 Diagnostic Criteria

The newest guide used in psychiatry to diagnose mental disorders is the DSM-5, released by the APA in 2013. The DSM-5 gives the following diagnostic criteria for Dissociative Identity Disorder: Code 300.14 “

A. Disruption of identity characterized by two or more distinct personality states, which may be described in some cultures as an experience of possession. The disruption of marked discontinuity in sense of self and sense of agency, accompanied by related alterations in affect, behavior, consciousness, memory, perception, cognition, and/or sensory-motor functioning. These signs and symptoms may be observed by others or reported by the individual.

B. Recurrent gaps in the recall of everyday events, important personal information, and/or traumatic events that are inconsistent with ordinary forgetting.

C. The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

D. The disturbance is not a normal part of a broadly accepted cultural or religious practice. Note: In children, the symptoms are not better explained by imaginary playmates or other fantasy play.

E. The symptoms are not attributable to the physiological effects of a substance (e.g., blackouts or chaotic behavior during alcohol intoxication) or another medical condition (e.g., complex partial seizures).”

Differential Diagnosis The DSM 5 lists the following alternative diagnoses, which may be considered/ruled out during the Dissociative Identity Disorder diagnostic process. Any of these can be co-morbid with Dissociative Identity Disorder except for Other Specified Dissociative Disorder. Other Specified Dissociative Disorder (formerly Dissociative Disorder Not Otherwise Specified) This can’t occur alongside DID because it is only diagnosed when someone does not quite meet the DID criteria. The two most common forms of Other Specified Dissociative Disorder involve having amnesia and dissociative parts of your personality which are not quite distinct/separate enough for DID, and having dissociative parts which are distinct enough to be alter personalities but without amnesia between them.

Major Depressive Disorder (often just called “depression”). Depression is very common in people with DID, but both depressed mood and depressive thoughts fluctuate because they are present in some alters but not others. Because of this Other specified depressive disorder may be diagnosed along with DID.

Bipolar Disorders – especially Bipolar II Changes in mood occur in Dissociative Identity Disorder due to switching between alters (alters often have different mood states to each other). Bipolar II does not involve full-blown mania.

Posttraumatic Stress Disorder There is now a dissociative subtype of PTSD and some overlapping features between DID and PTSD. PTSD is commonly comorbid with DID, but key differences exist as well. Complex PTSD is diagnosed as just PTSD in the DSM-5 (it is not considered a separate disorder). Differences between DID and Complex PTSD are described in the Dissociative Identity Disorder treatment guidelines for Adults; Complex PTSD is very common in people with Dissociative Identity Disorder, and dissociation is a symptom of both.

Psychotic Disorders (including Schizophrenia). Hearing voices (which come from alter personalities), and symptoms of partial flashbacks like feeling touched when nobody is there may be mistaken for psychotic hallucinations. The passive influence of alters causes many psychotic-like symptoms, but without any loss of contact with reality.

Personality Disorders (especially Borderline Personality Disorder (BPD). BPD has both transient stress-related dissociative symptoms and identity disturbance within its diagnostic criteria). Psychological tests can be used to determine if Dissociative Identity Disorder is present, and whether a personality disorder is also present.

Self-injury and self-desructive behavior is also common in both DID and BPD.

Substance/medication-induced disorders (e.g., Alcohol or drug addiction or side effects of another drug) Certain substances can cause episodes of amnesia and altered behavior (e.g. alcohol) or other dissociative experiences – in DID these occur during times when no substance has been used. Substance use disorders are common in people with DID.

Conversion Disorder (Functional Neurological Symptom Disorder). These disorders are common in people with DID, particularly psychogenic non-epileptic seizures (PNES), which can cause amnesia during the seizure only. Seizure Disorders – especially Complex Partial Seizures. EEG tests can differentiate between seizure disorders and seizure-like symptoms in DID. Dissociative symptoms are far greater in people with DID.

Factitious Disorder and Malingering. Both of which involve intentionally and knowingly pretending to have DID, e.g., by repeatedly giving false information to professionals. This is very different to having doubts about symptoms, or wondering if you ‘made it all up’. Psychological tests, observation, and corroborating history can be used to help diagnose. Malingerers have a clear motive, e.g. to avoid responsibility for a crime (despite the fact the diagnosis is rarely accepted for an ‘insanity’ defense). See also: Common Misdiagnoses and Dissociative Identity Disorder Symptoms described in the DSM-5 Dissociative Identity Disorder has a wide variety of symptoms, the primary symptoms that occur in all people with DID are described in the DSM psychiatric manual.

The key characteristic of Dissociative Identity Disorder is the presence of at least two distinct personality states (described in some cultures as an experience of “possession”). The presence of reoccurring periods of amnesia is the next most important characteristic, sometimes referred to as recurrent lapses in memory which go beyond ordinary forgetting. The remaining diagnostic criteria require symptoms to cause distress and/or impaired functioning in at least one area of life, and state that DID can only be diagnosed if no other condition provides a better explanation for symptoms. A mix of secondary symptoms are found in DID, particularly those caused by the passive influence of alters intruding into awareness, but no single secondary symptom is present in everyone with Dissociative Identity Disorder, and these do not form part of the diagnostic criteria. Distinct Personality States A person with Dissociative Identity Disorder has “distinct personality states”, this phrase refers to distinct (different, separate) identities that appear to be different personalities, they are often called alternate personalities, alternate identities, or “alters”.

Other terms sometimes used instead of “alters” include dissociative parts (of the personality), Apparently Normal Part of the personality (ANP), and Emotional Part of the personality (EP) Alters are only overt (obvious) in a small minority of people with DID in clinical situations. A change introduced in the DSM-5 makes it possible to diagnose DID without the diagnosing clinician directly observing a switch between alters: instead DID can be diagnosed if the person self-reports their presence and effects, or if another person describes observing a switch between alters.

Two clusters of symptoms indicate the presence of alters if they are not observed, these are described in the DSM-5’s extended description of Dissociative Identity Disorder: Sudden alterations or discontinuities in sense of self and sense of agency (Criteria A), and recurrent dissociative amnesias (Criteria B).

Sense of Self and Agency The terms “sense of self” and “sense of agency” are used in the DSM’s DIssociative Identity Disorder Criterion A, which describes the presence of distinct personality states, better known as alter personalities. It is the discontinuities (switches) between alters, as well as their presence that this criteria describes. A discontinuity in a person’s sense of self can affect any part of someone’s functioning. Attitudes, outlooks and personal preferences like preferred foods or clothes may change suddenly and inexplicably, and then change back again. This happens because alter personalities have different attitudes, outlooks and preferences, so a very sudden change without explanation occurs when an alter has either taken control or is strongly influencing the person. When that alter is no longer active, everything changes back (until the next time the same alter is active). During these times, a person may find have bought clothes they would never choose to wear, or a very outgoing person may suddenly become shy and introverted with no apparent reason. Discontinuity in a person’s sense of agency means not feeling in control of, or as if you don’t “own” your feelings, thoughts or actions. For example, experiencing thoughts, feelings or actions that seem as if they are “not mine” or belong to someone else. This is not the delusional belief that they belong to an outside person, it is the perception that their own speech, thoughts, and/or behavior do not feel like they belong to them and may make no sense to them. Emotions and impulses are often described as puzzling to the person. This happens in Dissociative Identity Disorder because some of the thoughts, feelings or actions of alter personalities intrude into their conscious awareness, even when they are not aware they have any alter personalities, or have amnesia for their actions.[3]:298 This is known as passive influence or partially dissociated intrusions of alter identities into conscious awareness (see below).

A person with DID may also experience a fully dissociated intrusion, and may say things like: I have no control, I watch what happens, but can’t stop it. I find myself “coming to” in the downtown area where I live, but I won’t remember where I parked the car. I have found myself crying uncontrollably and sucking my thumb, but I can’t explain why. Sometimes I’ve had people call me by a name I don’t recognize, and I don’t know who they are. A similar depersonalized experience can happen briefly during times of severe stress, especially in people with Borderline Personality Disorder, except that the person perceives the behavior as “out of character” rather than like another person; but in Dissociative Identity Disorder there may not be any obvious stressor causing the change, the actions and words may not relate to any prior distress, and the duration can be considerably longer (hours, days, or more). In DID, this happens because an alter personality has taken control, so attitudes, outlook and personal preferences change at the same time – leaving a feeling as if someone totally different in control of your body. This change in control is known as switching, only in Dissociative Identity Disorder can a person switch, because no other diagnosis has alter personalities that control (of the body) can be switched to.

Rapidly switching moods (within minutes or hours) are commonly caused by the presence of alters which have different moods, these changes in moods can be puzzling and lead to a misdiagnosis of Bipolar Disorder, type 2, however mood changes in Bipolar Disorder do not switch back and forth as rapidly. The combined changes in “sense of self” and “sense of agency” can cause a person to find themselves feeling like they are watching passively while someone else controls their body; they hear themselves speaking words they would never normally speak and that may not make sense to them, and which they are powerless to stop. The person has become a depersonalized observer of themselves. Some people describe this combined change of “sense of self” and “sense of agency” as feeling like an experience of possession, in a non-religious sense, or having their body “hijacked”. A person with DID may find that their body feels totally different during this time (e.g., like a small child, the opposite gender, huge and muscular), or may feel as if they are suddenly younger or older.

Recurrent Amnesia: Criterion B In DID, total amnesia for the actions of alter personalities is not necessary – it is possible for a person to be aware of many of their actions at the time, known as co-consciousness, or remember some of what happened later. If a person does have total amnesia the changes in a person’s speech, mood and behavior may be witnessed by others and reported back to them, but they may deny this “odd behavior” because they have no memory of it, which can lead others to incorrectly assume they are repeatedly lying. Several different types of amnesia can occur in people with Dissociative Identity Disorder, the common types are: “gaps in past memory of personal life events” (e.g., periods of childhood or adolescence; some important life events, such as the death of a grandparent, getting married, giving birth); this amnesia does not need to be restricted to traumatic events “lapses in dependable memory” (e.g., of what happened today, remembering how to do well-learned skills like how to do their job, drive, read, etc); this refers to the whole person – for example having a child alter who does not know how to read would prevent the person from remembering how to read when that alter was in control of the body “discovery of evidence of their everyday actions and tasks that they do not recollect doing” (e.g., finding unexplained objects in their shopping bags or among their possessions; finding perplexing writings or drawings that they must have created; discovering injuries; “coming to” in the midst of doing something). Dissociative fugues, which involve travel to an unusual place without any memory of the journey or its purpose, are common. People find suddenly find themselves “coming to” at the beach, hiding in a closet a home, in a nightclub, or in bed without any memory of the “lost” time. [3]:293 Some people with Dissociative Identity Disorder don’t match the classic view presented in the book and film Sybil, and the numerous media portrayals of DID since, because the amnesia in DID does not need to involve having no memory of what alters do when they are in control, a person can remember or be aware of what happens at the time but still have DID. People with total amnesia for the actions of alter personalities may refer to the periods of amnesia as blackouts or losing time, and may not be aware that they have alter personalities, this degree of amnesia does occur in some people with DID but has never been a required diagnostic criteria.

Other people with DID may have internal conversations with their alters and are able to describe them, which is something asked about in the Structured Clinical Interview for Dissociative Disorders. If no recurrent (reoccurring) gaps in memory for the past or present occur but all the other criteria are met then the similar diagnosis of Other Specified Dissociative Disorder Presentation 1 can be given instead. The three common types amnesia found in DID can be assessed using diagnostic screening and/or a clinical interview for Dissociative Disorders.

Passive Influence of Alters. The passive influence of alters cause many common secondary symptoms Dissociative Identity Disorder, symptoms that are often described as confusing and frightening, and can make a person feel like they are going crazy. People with DID normally have some of these symptoms, but all of them are optional rather than needed for diagnosis. While none of these symptoms are unique to Dissociative Identity Disorder, understanding why they happen and that they are common in DID can be very helpful. Examples of passive influences: Hearing a child’s voice – when no child is visible Speech insertion – saying things you don’t remember saying, or didn’t intend to say Thought insertion* – strong thoughts seem to come out of nowhere and don’t feel like yours Thought withdrawal* – your thoughts may suddenly seem to get taken away Internal conversations or hearing voices arguing*, internal struggle Hearing voices that are threatening, harsh or tell you to do self-destructive acts Intrusive or “made” feelings or emotions* – unexpected surges of feelings that are puzzling Intrusive or “made” impulses or “made” actions* – some impulses or behavior doesn’t feel like yours, you may be or may not be fully aware of it at the time, you may be told of things you did by others or find you have self-injured Temporary loss of well rehearsed knowledge or skills, e.g. forgetting where you live or how to drive or do your job (amnesia) Self-alteration – suddenly, inexplicably feeling that your body, thoughts, or urges belong to someone else or are not yours (when not feeling depersonalized/detached from self, that occurs without switching to an alter)

Self-puzzlement – you don’t understand why you feel and behave as you do. The symptoms marked with * are known as Schneiderian first-rank symptoms (FRS) and were historically used to diagnose Schizophrenia, but are actually more common in DID. In DID they not given delusional explanations because they do not have a psychotic origin in people (except in the uncommon case that a psychotic disorder also exists). Schizophrenia is a very common misdiagnosis for DID. An influential study of 220 people with Dissociative Identity Disorder found that most people experienced several of the symptoms above, although no single symptom was experienced by everyone, and none are actually diagnostic criteria. These symptoms can be understood as the result of alter personalities partially intruding into a person’s conscious awareness. For example, hearing a child’s voice can be caused by the voice of a very young alter personality intruding into conscious awareness without fully taking over control.

The Dissociative Experiences Scale (DES) is a self-assessment screening tool (a questionnaire) that is useful for identifying people who experience a high degree of dissociation. It is available in many languages. A definite diagnosis should only be made by a qualified clinician. This can be done using a clinical interview based on the Dissociative Experiences Scale, or by using one of the two clinical interviews developed for Dissociative Disorders, the SCID-D or DDIS (described below). The Somatoform Dissociation Questionnaire (SDQ-20) is another self-assessment screening tool for Dissociative Identity Disorder and other Dissociative Disorders. It is a questionnaire that measures physical symptoms historically found to be common in people with Dissociative Disorders, including DID and Other Specified Dissociative Disorder. Symptoms assessed include sensory disturbances (e.g., tunnel vision, psychogenic blindness, auditory distancing, numbness/insensitivity to pain), other conversion disorder symptoms (e.g., psychogenic paralysis and non-epileptic seizures), genital symptoms (difficulty urinating, genital pain that does not occur during intercourse), and more. The SDQ-20 was developed Dutch clinicians and researchers in the late 1990s. Average scores have been published for the DID, OSDD (formerly known as DDNOS), Somatoform Disorders, Eating Disorders, Schizophrenia, Anxiety Disorders, major Depression, mixed psychiatric disorders, Bipolar disorder, and a non-psychiatric group. The SDQ-20, and the shorter SDQ-5, are available online in multiple languages, along with their scoring instructions. Somatoform Dissociation is “manifested in the loss of the normal integration of somatoform components of experience, bodily reactions and functions … it is a disturbance of mental function”.

This has been shown to be higher in Disssociative Identity Disorder than in people from any other diagnostic group, including those diagnosed with Somatoform Disorders, and it also correlates with trauma history, especially physical and sexual trauma occurring from ages 0-6 (both self-reported and corroborated trauma). Dissociative Disorders Interview Schedule (DDIS), developed by Dr Colin A. Ross et al. This uses some observation from a clinician, and is a structured interview. No special training is needed to carry this out and it can be downloaded without charge from the Ross Institute. It has been updated for the DSM-5. Structured Clinical Interview for Dissociative Disorders – Revised (SCID-D), is regarded as the gold-standard diagnostic tool for Dissociative Identity Disorder. It is a semi-structured clinical interview that uses observation from a trained clinician. It was developed primarily by Dr Marlene Steinberg and can accurately assess all Dissociative Disorders.

It can distinguish between all Dissociative Disorders and dissociative or identity symptoms present in Borderline Personality Disorder, Schizophrenia, PTSD, major Depression, and Acute Stress Disorder. Each domain of dissociative symptoms is assessed: amnesia, depersonalization, derealization, identity confusion and identity alteration, and then rated for severity (absent, mild, moderate, or severe). This interview can only be carried out after specific training, and includes the interviewer noting subtle indicators of dissociation, including intra-interview amnesia, also known as micro-amnesias, eye movements, trance states, changes in demeanor and mood, avoidance or uncertainty in answering certain questions. The questions are open-ended to elicit detailed answers. Questions avoid “leading or intrusive” wording, but many people may still have emotional reactions to certain questions. Clinicians wishing to use the SCID-D can receive training from International Society for the Study of Trauma and Dissociation (ISSTD), or affiliate organizations worldwide.

The Adult Treatment Guidelines for Dissociative Identity Disorder were first produced over 20 years ago, they were developed by expert consensus and guided by large-scale clinical research. The current Adult version, from 2011, is free to download from the International Society for the Study of Trauma and Dissociation. The treatment guidelines for Dissociative Identity Disorder also cover similar forms of Dissociative Disorder Not Otherwise Specified (DDNOS), which is now known as Other Specified Dissociative Disorder. Research shows that treatment based on the treatment guidelines, which focuses primarily on outpatient psychotherapy, improves symptoms, increases functioning and reduce the rates of hospitalization. Poor outcomes were found when treatment did not follow the guidelines, for example treatment which did not directly engage alter identities and seek to reduce amnesia, or when treatment was focused on “memory recovery”. Harm was far more likely to occur when DID was not treated at all. Treating Dissociative Identity Disorder did not only consistently improve dissociative symptoms, it also improved patients’ general distress and depression. Psychotherapy (talking therapy) is the primary method of treatment for Dissociative Identity Disorder, and has the most evidence-based research showing significant improvements with psychotherapy which adheres to the treatment guidelines. No specific type of psychotherapy is recommended. Psychotherapy for Dissociative Identity Disorder follows the basic principles of general psychotherapy,[1] with additional of techniques which address dissociative symptoms, for example guidance on working with alters. Treating Dissociative Identity Disorder is not primarily based around uncovering trauma memories, hypnotism, or trauma exposure techniques. A recent study that compared experts in the treatment of Dissociative Disorders to community clinicans found that experts spent more time on techniques for the containment of trauma memories than uncovering them. Experts in treating DID also spent more time on grounding and safety interventions.

The goal of treatment is integrated functioning, which means a workable form of integration or harmony among identities. Is Integration Essential? Integration in DID refers to the process of someone gradually getting closer and more connected to other parts of themselves, so that alter identities are not as dissociated (disconnected) from the person, or from each other. Many people use the word integration to refer solely to fusion, which is the permanent merging of alters within a person with Dissociative Identity Disorder. Full integration, known as final fusion, into a single identity is not essential for healing to take place: it is only part of a long-term process, with many improvements to daily life occurring on the way. Some people mistakenly believe that the only goal of treatment for Dissociative Identity Disorder is simply to have a single identity rather than multiple identities.

However, this simplistic view does not take into account the work of addressing the traumatic experiences that caused multiple identities in the first place, or recovery from the other co-morbid disorders that people with DID typically have. While some people do choose final fusion as their goal, and this outcome is seen by some professionals (e.g., Kluft), as the most stable over the longer term, not everyone wants to achieve this, or is able to achieve this. Reasons for not integrating fully include serious and long-term situational stress, avoiding addressing unresolved and painful life issues or traumatic memories, lack of money for treatment, comorbid physical or mental disorders which don’t improve as treatment progresses, advanced age, and/or significant investment in either alters themselves or in having DID.

An alternative goal for treatment involves achieving a workable form of harmony between alter identities, known as resolution, and this is actually a more common outcome than full integration. Resolution involves achieving a cooperative arrangement between the person’s identities, which is a sufficiently integrated (i.e., connected) and co-ordinated way of functioning that promotes “optimal functioning”. International treatment studies have shown that long-term psychotherapy helps people with Dissociative Identity Disorder achieve significant and sustainable improvements in their overall mental health as well as their DID symptoms, regardless of whether they eventually reach final fusion, and whether they are treated by a Dissociative Disorders specialist or a “community clinician”. Note: The international treatment guidelines for Dissociative Identity Disorder in Adults state that therapists should not try to ignore or “get rid” of any alters: integration involves merging/fusing together which is the opposite. Previous treatment studies have shown full integration (final fusion) was achieved for between 1 in 3 and 1 in 6 of people, but do not generally state how many people chose not to fully integrate.

Source: Trauma Association

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