The purpose of the literature review is to discuss some of the reasons offered in the current literature on Dissociative Identity Disorder that postulate why this group of patients often goes misdiagnosed or undiagnosed for several years despite seeking medical treatment for symptoms. I hypothesize that this disorder goes unrecognized because myths, media, and controversy have blinded both doctors and patients to the disorders true presenting symptomatology and that the most appropriate course of action will raise awareness and better educate the society as a whole. The reasons offered vary within the professional literature; however, common underlying themes appear to be ignorance, confusion, controversy, misconception, distortion, rejection and the hidden nature of dissociative symptoms. However, I feel the evidence congruently supports and adds to the conclusions of others, as well as to mine. The treatment for Dissociative Identity Disorder is unique and tailored to them, as such is true; one can surmise that patients with this disorder undiagnosed and untreated likely will not see any lasting improvement without an accurate diagnosis resulting in proper treatment. The evidence supports the conclusion and implies without properly educating our doctors and patients on the true presenting symptomatology we should not expect that any of these problems to dissipate or the number of undiagnosed Dissociative Identity Disorders to decrease. I believe that an accurate and speedy diagnosis will improve treatment success rates for previously low trajectory patients, and as such may be true; a collaborated effort must be made to uncover the truths, bust the myths, and educate the people on the facts about Dissociative Identity Disorder to help those struggling silently and alone.
Dissociative Identity Disorder is a mental illness in which often goes undetected for many years. This disorder manifests in childhood and becomes increasingly challenging for the patient to manage as the years go on. Often they seek treatment, are misdiagnosed and/or remain undiagnosed, and do not receive the correct treatment for many years. It is consistent throughout the literature, as well as noted by many respected experts (Boon & Draijer, 1993a; Coons, Bowman, & Milstein, 1988; MartÃnez-Taboas, 1991; Middleton& Butler, 1998; Putnam, Guroff, Silberman, Barban, & Post, 1986;Rivera, 1991; Ross, Norton, & Wozney, 1989), that these patients spend an average of 11.9 years in the mental health field seeking treatment for symptoms before they get an accurate diagnosis of Dissociative Identity Disorder (Chu, 2005). Many professionals would agree that many patients with Dissociative Identity Disorder are often high functioning, have jobs, maintain lives with children and families, and only the people close to them know they are suffering (Spring, 2011). Is it proposed, that these patients are so adapted to the disruptions in memory and consciousness that many of these patients only seek treatment after some crisis or build-up of stressors that leads to a sudden and shattering breakdown (Spring, 2011). Many professionals would also agree that these patients seek treatment for varying ailments and still go undetected, undiagnosed, or worse misdiagnosed for many years (Spring, 2011; Steinberg, 2008).
There are three primary tests that can be given to determine an accurate diagnosis of Dissociative Identity Disorder, including the Dissociative Experiences Scale (DES), the Somatoform Dissociation Questionnaire (SDQ-20), and the Structured Clinical Interview for Dissociative Disorders (SCID-D) (Spring, 2011). The literature supports that these diagnostic tests can accurately diagnose and differentiate a patient with a dissociative disorder from another mental illness “like schizophrenia (Fink & Golinkoff, 1990; Ross, Heber, Norton, & Anderson, 1989; Steinberg, Cicchetti, Buchanan, Rakfeldt, & Rounsaville, 1994) eating disorders (EDs; Gleaves, Eberenz, Warner, & Fine, 1995; Ross, Heber, Norton, & Anderson, 1989), panic disorder (Ross, Heber, Norton, & Anderson, 1989), borderline personality disorder (Boon & Draijer, 1993b; Fink & Golinkoff,1990), partial complex seizures (Ross, Heber, Anderson, et al., 1989), simple posttraumatic stress disorder (Dunn, Ryan,Paolo, & Miller, 1993), and dissociative disorder not otherwise specified (Ross, Anderson, et al., 1992” (…as cited by Gleaves, 1996). Given that there are so many tests available to give an accurate diagnosis, it is hard to believe many people who have Dissociative Identity Disorder will spend years seeing doctors within the mental health field only to be misdiagnosed and left untreated. Quite commonly, people with Dissociative Identity Disorder are misdiagnosed with schizophrenia, bipolar, a psychotic disorder, an affective disorder, a substance abuse disorder, borderline personality disorder, or some other personality disorder (Spring, 2011).
A misdiagnosis, in this case, can go wrong for the patient in many ways. However, my main focus of concern is medication overdose, which I myself have been subjected to at the hands of well-meaning doctors. Sometimes these patients are given powerful antipsychotic medications that they don’t need because they are misdiagnosed with schizophrenia, bipolar, or another psychotic disorder (Steinberg, 2008). Dissociative symptoms will not resolve with medications alone and need treatment that specified for this group of disorders (Steinberg, 2008). Naturally, because they are not receiving the right treatment they are still symptomatic when given medications. As a result, often these patients are overprescribed many medications in an attempt to control the symptoms.
A perfect example of how this misdiagnosis could result in further scarring the patients when a patient with Dissociative Identity Disorder is given a diagnosis of schizophrenia and given narcoleptics to treat schizophrenic symptoms. On the mild end of the spectrum, these patients often gain weight with treatment, lose aspects of a positive self-image and/or self-esteem, and often feel stigmatized as mentally ill and/or obese. On the other end of the spectrum, there are side effects like Tardive Dyskinesia. Tardive Dyskinesia (TD) is a neurological disorder that can be a side effect of taking antipsychotic medications, like those taken to control schizophrenia (DrugWatch, 2013). Tardive Dyskinesia causes involuntary, rapid movements of the face and body (DrugWatch, 2013). Tardive Dyskinesia has no cure, symptoms may be mild or only last for a short time, but they may continue for life causing more pain and social discomfort to the patient (DrugWatch, 2013). Patients who are undiagnosed are not being treated effectively. I believe that in the long run, if people were more educated and aware of how this disorder presents more patients would be treated accurately and more successfully.
Ignorance
Ignorance or lack of information is mentioned either directly or indirectly by many others who are authorities on the subject of dissociative disorders. Author, James A. Chu (2005), confronts this question directly stating “lack of education among clinicians about dissociation, dissociative disorders, and the effects of psychological trauma…. are common reasons for the delay and/or misdiagnosis of Dissociative Identity Disorder patients (p. 73). I propose that the confusion presented by Spiegel, Loewenstein, Lewis-Ferna´ndez, Sar, Simeon, Vermetten, Carden˜a & Dell (2011), as well as, the controversies proposed by Boysen (2011), Gillig (2009), and Chu (2005) feed misconceptions and fuel controversy that lead to the rejection felt by patients and expressed by practitioners in Gillig (2009).
Confusion
It is proposed by those who seek for the revision in the diagnostic criteria that inconsistencies throughout the literature that define dissociative experiences and the inconsistencies in the diagnostic criteria has led to confusion among practitioners and mental health workers. After a careful review of the definitions of dissociation and conceptualization criteria of Dissociative Disorder in the DSM-IV-TR and the ICD-10, as well as, the conceptual issues in defining dissociation and Dissociative Disorders Spiegel, Loewenstein, Lewis-Ferna´ndez, Sar, Simeon, Vermetten, Carden˜a & Dell, (2011) advocate for a revision of the diagnostic criteria. They note that neither the DSM-IV-TR of the American Psychiatric Association (APA) nor the ICD-10 of the World Health Organization (WHO) give a consistent or clearly definitive definition for dissociation and their conceptualizations of dissociation are inconsistent (p.825). However, the censure pertaining to the inconsistencies throughout the literature that defines dissociative experiences as cause to the confusion among students, caregivers, practitioners, and professionals is not just limited to the definitions, but also to the symptomatology.
Confusion among the symptomatology, or the defined set of symptoms that are characteristic of a Dissociative Identity Disorder and exhibited by a patient, is cited by many as a leading reason for the confusion among practitioners within the mental health field. Evidence from studies demonstrates that the symptomatology in disorders like borderline personality disorder and attention deficit are very similar to the presenting symptomatology in Dissociative Identity Disorder (Gilligs, 2009). Many patients with Dissociative Identity Disorder seek treatment for affective, psychotic-like or somatic symptoms, which is likely a probable contributor to the confusion and misdiagnosis (Spring, 2011; Gilligs, 2009).
Laddis & Dell (2011) conduct an evaluation of schizophrenia and Dissociative Identity Disorder patients and find, in almost all cases of Dissociative Identity Disorder the patients report auditory hallucinations or hearing voices. However, if they report this symptom to a doctor who is not educated in dissociative disorders they will likely be misdiagnosed as having schizophrenia because this symptom is listed as part of the diagnostic criteria for schizophrenia and not for Dissociative Identity Disorder. Along with depersonalization and derealization symptoms, a patient with Dissociative Identity Disorder will also present with many of Schneider’s (1959) rank schizophrenia symptoms just as a person with schizophrenia would. First rank symptoms, like passive influences or “somatic and mental activities that are experienced as not mine” are also found in Dissociative Identity Disorder patients, and three studies have found that they occur more frequently in Dissociative Identity Disorder patients than in schizophrenia patients (Laddis & Dell, 2011, p. 398).
Procedural Oversight
James A. Chu (2005), author of the “Guidelines for Treating Dissociative Identity Disorder in Adults” states “standard, diagnostic interviewing and mental status examinations do not include questions about dissociation, PTSD symptoms, or a history of psychological trauma” is another procedural oversight that leads to misdiagnosis in Dissociative Identity Disorder (p.73). Which I believe to be the main procedural oversight that prevents an accurate diagnosis of Dissociative Identity Disorder is made sooner. However, there is evidence within the literature to suggest that other types of procedural oversights may lead to the misdiagnosis of Dissociative Identity Disorder as well.
While I could not dispute or verify this, Sar , Warwick , & Dorahy suggests that age-related language differences create communication barriers that prevent practitioner from using the Structured Clinical Interview for Dissociative Disorders and the Dissociative Disorders Interview Schedule on children, as a result, rather than the child himself/herself being interviewed for dissociative symptoms the Child Dissociative Checklist, is administered to the child’s caregiver. I agree with Sar , Warwick , & Dorahy (2012) that if the test is not being given to the child than this is a type of procedural oversight that could create many misdiagnoses in childhood Dissociative Identity Disorder patients, which would account for the lack of case cited by a few.
Misconception
In the literary critique by Sar , Warwick , & Dorahy, (2012), the authors confront some of the unwarranted conclusion in the Boysen (2011) “The scientific status of childhood Dissociative Identity Disorder” (Psychotherapy and Psychosomatics, 2011, p. 329-34). In the response to Boysen’s (2011), Sar , Warwick , & Dorahy (2012) conclude their critique, declaring more research is needed to make age-appropriate clinical evaluation tests for children and suggests “screening studies on children and adolescents in the community” before anyone could consider childhood Dissociative Identity Disorder an extremely rare phenomenon as Boysen states (p.2). Throughout the literature, many note a common miscomputation of Dissociative Identity Disorder is that it is rare, even though there is mounting evidence to suggest that it is fairly common. The current research indicates a prevalence of 1-3 % of the population could have a dissociative disorder (Spring, 2011; Chu, 2005).
Controversy
Despite misleading conclusions that may have been drawn by Boysen, (2011) he directly addresses the controversial nature of a Dissociative Identity Disorder, which I believe is at the heart of many misconceptions about Dissociative Identity Disorder diagnosis and may lead to many misdiagnoses. It was proposed, that the limited amount of relevant research into childhood cases of Dissociative Identity Disorder and the conflicting models of etiology are the reasons behind the ongoing controversy of this diagnosis. Boysen (2011) and Gillig (2009) both allude that the controversy surrounding the etiology of the disorder asks: is this disorder willful and malingering and/or iatrogenically caused symptoms as Spano’s (1994) Sociocognitive Model proposed or is it as leading evidence suggests, a disorder with a trauma etiology?
There are plenty of advocates for the Trauma Model (TM), which describes an etiology of severe childhood abuse, however, this model, as well as the Sociocognitive Model (SM), has been the subject of intense analysis by skeptics. The Sociocognitive model first proposed by Spano’s (1994) proposed that Dissociative Identity Disorder was iatrogenically created and maintained by therapists, and suggests that individuals affected are enacting a social role. This suggestion has been supported openly within the literature only by a few. However, there seems to be more evidence or studies that support the trauma model of Dissociative Identity Disorder.
Boysen (2011) argues, another area of controversy among clinicians is the lack of evidence or data that discusses the status of Dissociative Identity Disorder among children, and it is often-a repeated problem with the diagnosis that childhood cases are rare. Boysen’s (2011) literary research produced a total of 255 cases of childhood Dissociative Identity Disorder, which I feel is evidence enough that childhood Dissociative Identity Disorder exists to warrant this being considered a real diagnosis. Within this sample, 93% were children who were in treatment, and only 23% of the case studies were multiple personalities the presenting problems. This alludes to the conclusion, that the majority of the time the presenting symptom in children will not be multiple personalities and further evaluation will be needed to accurately diagnose a child patient with Dissociative Identity Disorder. In fact, research indicates that only 6 % of the people with Dissociative Identity Disorder will present publicly and obviously with ‘multiple’ or ‘dissociated’ identities (Kluft…as cited by Spring, 2011).
Boysen also states 65% of the research for all 255 cases was done by only four U.S. research groups. The author perhaps oversteps the bounds of his evidence and concludes “childhood Dissociative Identity Disorder itself appears to be an extremely rare phenomenon that few researchers have studied in-depth” which I find to be a misleading conclusion at best. If only a few researchers are looking into this pressing matter than naturally, it would likely be an extremely rare phenomenon to find relevant research on this matter too. I feel this conclusion is suggestive of something misleading because there are research articles that evaluate children and have demonstrated dissociative symptomatology in children including populations of children and adolescents with other disorders such as Post-Traumatic Stress Disorder (PTSD; Putnam, Hornstein, & Peterson, 1996), Obsessive-Compulsive Disorder (OCD; Stien & Waters, 1999) and reactive attachment disorder, as well as in general populations of traumatized and hospitalized adolescents (Sanders & Giolas, 1991; Atlas, Weissman, & Liebowitz, 1997) and delinquent adolescents (Carrion & Steiner, 2000) (…as cited by the International Society for the Study of Trauma and Dissociation, 2013). I feel unwarranted conclusions like this one contribute to current misconceptions and controversies that keep many children and adults with Dissociative Identity Disorder undiagnosed and untreated. Many professionals have suggested people perceive this disorder as a rare, however as the research revealed this disorder is much more common than once believed (Chu , 2005; Spring, 2011).
Recently, Boysen was published again, this time with VanBergen (2013) to which they review the published research (2000-2010) on adult Dissociative Identity Disorder in an attempt to review the scientific and etiological status of Dissociative Identity Disorder within the community. Their review of the research found 1171 new cases of Dissociative Identity Disorder reported. The discern that Dissociative Identity Disorder is a topic of study remains ongoing but lacks the research to prove or disprove controversy surrounding it ecology, but overall is accepted within the scientific community (Boysen & VanBergen, 2013).
Rejection
It was proposed in the literature that doctors refuse to accept this condition as a real diagnosis. Carolyn Spring is a former social worker who specialized in working with traumatized children and is the current manager for Partners of Dissociative Survivors (PDAS) and Trauma and Abuse Support Centre (TASC). In 2011, the “Healthcare Counseling & Psychotherapy Journal” published Spring’s article “A Guide to Working with Dissociative Identity Disorder”, in which she openly speculates that the majority of people will receive a misdiagnosis because doctors refuse to accept this condition as a real diagnosis. Sping’s (2011) conclusions are confirmed in Gleaves (1996, p. 46) who presents a patient statement from Cohen et al (1991) where a patient reports being rejected by a doctor, met by skepticism, and suspected of attention-seeking behavior.
Distortion
Reflecting on Spring’s whole article, she also names a second culprit in her opening line, “The view of many people with regard to Dissociative Identity Disorder (DID) has been influenced by Hollywood representations such as in the book and film Sybil” (Spring, 2011, p.1 ). Spring (2011) addressed the nature of dissociative symptoms and speaks about Sybil, media, and misconception. Spring presents the diagnostic criteria given, the presenting symptoms, and leaves the reader to compare this to the media portrayed Sybil. Spring (2011) makes it very clear, the Hollywood portrayed “Sybil's" dramatized presentation of Multiple Personality Disorder has given people a false image of how Dissociative Identity Disorder presents. In truth this disorder does not often present so plainly as the movie portrays. Spring’s whole argument seems to allude that she believes two causes are at the heart of misdiagnoses in Dissociative Identity Disorders- misinformed doctors that believe this disorder does not “exist” and/or that the media has corrupted our minds with a false image of how the disorder presents in such a way that the disorder is not recognized for what it is when it presents. I agree the famous book and film “Sybil” has given a false interpretation of what this disorder presents as and the media continues to feed this distortion of the truth with shows like “United States of Tara”. I agree with Spring (2011), who suggests that the false vision the media portrays causes confusion among society.
Concealed Nature of Dissociative Symptoms
In truth, the symptoms of Dissociative Identity Disorder are hidden, which is notably contrary to what the media picture presents and does create confusion that could lead to misdiagnosis (Chu, 2005). Steinberg (2008) argues the symptoms of Dissociative Identity Disorder are often hidden even from the patient, suffering is evident it, but is often hard to describe, often presenting with co-morbid diagnosis’s and/or symptoms such as depression, anxiety, or substance abuse. Therefore, it takes a skilled doctor with an accurate diagnostics test, like the SCID-D, to detect and diagnose dissociative disorders. Elizabeth Howell describes Dissociative Identity Disorder as ‘a disorder of hiddenness’, and proposed that the majority of people with Dissociative Identity Disorder are motivated by shame to conceal their symptoms (as cited by Spring, 2011). However, I propose that shame and fear of rejection and stigmatization prevent patients from coming forward as well.
According to Steinberg, the five obvious and hidden symptoms of Dissociative Disorders are “Amnesia or memory problems involving difficulty recalling personal information; depersonalization or a sense of detachment or disconnection from one’s self or feeling like a stranger to one’s self; derealization or a sense of disconnection from familiar people or one’s surroundings; identity confusion or inner struggle about one’s sense of self/identity; identity alteration or a sense of acting like a different person”. Along with these symptoms these patients usually present with comorbid disorders like anxiety, depression and mood swings that make the other symptoms hard to see or may in some cases mask symptoms almost completely.
True presentation of Dissociative Identity Disorder.
It has been recommended by some professionals that “a set of polythetic criteria would more accurately portray the typical polysymptomatic presentations of Dissociative Identity Disorder patients” (Dell, 2001… as cited by Chu, 2005). So I composed a symptom complex based on the literature reviewed that will help us identify a patient with Dissociative Identity Disorder in the future. I feel this may be the best way to educate the people and clear some of the confusion among society as a whole. A symptom complex is defined by Merriam and Webster (2013) as a group of symptoms that occur together and are characteristic of a certain disease, disorder, or condition.
Research from many professionals and conducted studies (Boon & Draijer, 1993b; Coons, Bowman, & Milstein, 1988; Putnam, Guroff, Silberman, Barban, & Post, 1986; Ross et al., 1990; Ross, Norton, & Wozney, 1989; Schultz, Braun, & Kluft, 1989) have collectively documented a relatively clear set of clinical Dissociative Identity Disorder features. A clear set of clinical Dissociative Identity Disorder features “will include dissociative symptoms such as amnesia, ongoing amnesia and lack of autobiographical memory for childhood, chronic depersonalization and derealization, as well Schneiderian symptoms or hearing voices and passive influence experiences, and identity alteration…” (…as cited by Gleaves, 1996). To further clarify, derealization refers to distortions in perceptions of objects, events, or one’s surroundings (Carlson, E. B., Dalenberg, C., & McDade-Montez, E. (2012), while depersonalization is often accompanied by derealization, derealization refers to a disconnection from oneself.
Presumably, a person with amnesia will likely not be aware of the amnesia because they are unaware of the event, as well as, a person with depersonalization, derealization, or Schneiderian Symptoms unless directly asked and educated about these symptoms would likely not know that these symptoms are not present in every one or are suggestive of a mental illness. This implies as the evidence suggested previously states, a person with symptoms of Dissociative Identity Disorder will likely be unaware that these are symptoms’ of a mental disorder, they may have a hard time describing them, or may never mention them because they perceive them as normal. Therefore, I feel it is important for clinicians to be screening for them.
Patients with dissociative disorders suffer from a disruption in the usually integrated functions of consciousness, memory, identity or perception of the environment (Spring, 2011; Steinberg; and Psychotherapy and Counseling, 2013; American Psychiatric Association, 2000a, p. 519; Chu, 2005, p. 74). This lack of a coherent sense of autobiography itself is what leads to problems associated with establishing a core sense of identity (Spring, 2011). However, since they have lived most if not all of their lives with this problem many have learned creative coping mechanisms that help them cover these symptoms. Patients may find that memories and feelings may not go together, there may be recalled information without the accompanying affect, or there may be overwhelming feelings with no conscious memory of their cause (Spring, 2011).
These patients often mistaken refer to themselves as “we” instead “I”, or refer to themselves as having, among others “parts,” “parts inside,” “aspects,” “facets,” “ways of being,” “voices,”“multiples,” “selves,” “ages of me,” “people,” “persons,” “individuals,” “spirits,” “demons,” “lines,” and “others” (Chu, 2005, p. 74). These patients may attempt to describe periods of depersonalization or articulate hearing voices (Gillig, 2009; Psychotherapy and Counseling (2013) proposed that these patients are usually vulnerable to suggestive influences and highly hypnotizable. They may manifest posttraumatic symptoms such as nightmares, flashbacks and startle responses, or also PTSD like symptoms and/or they may self mutilate, possess the ability to control pain or experience conversion symptoms (e.g. pseudoseizures) (Psychotherapy and Counseling, 2013). In some studies, a pattern of child abuse or a “disorganized and disoriented attachment style in the absence of social and familial support” seems to be evident in these patients’ family histories. Other studies present, the parenting style these patients are subjected to, as authoritarian and rigid, but strangely enough with reverse order of the parent-child relationship (Gillig, 2009).
Instead of presenting obliviously histrionic or unstable as portrayed in the media, these patients will present with co-morbid disorders both dissociative and post-traumatic symptoms, as well as many apparently non-trauma-related issues such as depression, substance abuse, eating disorders and anxiety (Spring, 2011) Evidence from a study conducted by Armstrong and Loewenstein (1990) administered a variety of objective and projective testing instruments to group of 14 patients with Dissociative Identity Disorder to access the presenting personality profiles of patients with Dissociative Identity Disorder. This study found that persons with Dissociative Identity Disorder were not histrionic or unstable, but rather were intellectualized, obsessive, and introversive (Gleaves, 1996).
Fink and Golinkoff (1990) conducted a study which evaluated persons with Dissociative Identity Disorder, as well as a sample of patients with borderline personality disorder or schizophrenia and found the average Histrionic scale of the MCMI was only 46.3 for the dissociative identity disorder group and patients scored highest on the Avoidant scale with 102.9 percent, followed by 97.3 percent with Self-Defeating personality styles. This suggests that persons affected will likely not appear in an overdramatized histrionic presentation instead the person will likely be intellectualized, obsessive, introversive, with an avoidant and/or self-defeating personality profile.
Gillig (2009) presents a typical presenting person with Dissociative Identity Disorder may be a 30-year-old woman with a history of chronic suicidal feelings and/or some suicide attempts. The patient may report a history of childhood abuse, typically the patients report a higher occurrence of sexual abuse than the incidences of physical abuse. Patients may report sexual promiscuity, decreased libido and inability to have an orgasm. They may dress in clothes typical of another gender and/or claim to be another gender. The high levels of dissociative experiences experienced by these patients may also include many somatic symptoms (e.g. Briquet syndrome or somatization disorder). These patients also may report meeting people who say they are acquainted with them, but whom they do not recall meeting, and/or find clothes within their own possessions that they do not recall purchasing and normally would not wear.
Discussion
In this review, we sought to answer the question of why these patients go undiagnosed and misdiagnosed for so many years. While reviewing the current literature available to the public and students we ask what are the reasons offered in the literature on Dissociative Identity Disorder that explain why this group of patients often goes misdiagnosed or undiagnosed for several years, despite seeking medical treatment for symptoms? We attempt to understand the proposed challenges associated with diagnosing these patients, as well as, aim to educate, inform and shed light on misconnections by presenting the truth in light of the evidence from current literature.
Thus far, in all of my life, I have not seen one magazine or handout at the doctor’s office, nor at the psycho therapist’s office, the psychologist’s office, or anywhere for that matter, that provides the world with accurate information on Dissociative Identity Disorder’s true presenting symptoms. Therefore, I presume the only information known to the general public is that which the media portrays- the exceptions being those who intentionally look for the correct answers from reputable sources on the topic, like me. While Dissociative Identity Disorder looks comical in shows like “United States of Tara”, and dramatic and alluring on “One Life to Live” it is generally appears nothing like these shows portray and these patients are often suffering silently.
We find that the literature supports the conclusion that this disorder goes unrecognized because myths, media, and controversy have blinded both doctors and patients to the disorder's true presenting symptomatology. If this is true than the most appropriate course of action will be to invest time into carefully conducting research that will raise awareness and better educate society as a whole.
Method
We conducted a brief interview of four psychiatric patients who have had little success with their current diagnosis, have tried medications to treat symptoms, and have at least one hidden symptom undiagnosed and untreated. We expected to find that these patients have never been interviewed by a doctor about dissociative symptoms, nor been educated about the hidden symptoms. We expected to find that these patients have all been subjected to trial and error medication treatment before settling on current treatment. We expect to find that all patients will report at least one side effect of mediations and a low level of satisfaction with treatment. We hope to briefly illustrate that there is some truth to the conclusions and assumptions drawn in this review. We hope to demonstrate and inspire more research of this nature to truly evaluate the number of undiagnosed untreated dissociative patients and the impact of misdiagnosis on dissociative patient’s success rates.
Participants
Participants, three females, and one male had all previously been diagnosed with a mental illness, treated with medications and/or therapy. Participants were chosen based on their low success rate with current diagnosis and/or treatment. Participants selected have reported at least one childhood trauma, and have at least one primary symptom, such as amnesia, or periods of life, events or time that are missing from memory. Participants were informed that this was a study for school and interviewed individually with the DES online screening tool and the questioner designed for the study.
Procedures
The method of study was first by the internet and then interview, using the search engines Google Scholar and Google, as well as the Argosy Online Library Database. We used keywords like “Dissociative Identity Disorder, and Dissociative Identity Disorder and Misdiagnosis” to search for related text. Using this method there were no actual studies that pertained to my question exactly, however, within the literature, there were plenty of different suggested reasons that misdiagnosis occurs among this group of patients. An experimental questioner was then made to determine age, diagnosis, years in treatment, a number of medications tried to treat symptoms, levels of satisfaction and success on current medications, side effects experienced, knowledge of Dissociative Identity Disorder, and if they were previously screened for Dissociative Identity Disorder.
We interviewed and tested four participants using the DES as a screening tool to ask about symptoms of dissociation. Overall the DES, has been found to have good reliability and validity, ranging from approximately .80 to .96 (Bernstein & Putnam, 1986; Frischolz et al., 1990), and internal consistency has repeatedly been found to exceed.90 (Frischolz etal., 1990; Cleaves et al., 1995) (Ross Institute, 2007). Additionally, the DES has been demonstrated as a good screening tool, as it can differentiate or single out a Dissociative Identity Disorder diagnoses with a sensitivity of .93 and a specificity of .86 when administered along with instruments measuring similar and different constructs (Gleaves & Eberenz, 1995a; Boon and Draijer, 1993) (Ross Institute, 2007). The higher the DES score, the more probable it is that the person has Dissociative Identity Disorder. This is a screening tool that alone does not constitute a diagnostic tool, but can be used to discern if a clinical assessment for dissociation is warranted.
The Expectation of Study
We expected to find patients with low satisfaction in treatment success rates and higher than normal levels of dissociative symptoms.
DES Results
The average test result on the DES was 54.25, which is well beyond the 30-40 that is suggested as a positive marker for dissociative symptoms’ and Dissociative Identity Disorder. The average patient with Dissociative Identity Disorder scores 40 or higher, with roughly 17% of patients with Dissociative Identity Disorder scoring lower than a 20 (Ross Institute, 2007).
Treatment
The average age of participants was 37 years old, with an average of 7.4 years seeking treatment. One patient reports a diagnosis of Depression, three patients report a diagnosis of bipolar, and one patient reports a co-morbid diagnosis of post-traumatic stress disorder. The average amount of medications tried before settling on current medication to treat for symptoms was 5 different types of medication. Each participant was prescribed an anti-psychotic at least once during their treatment with no real success noted. The average amount of medications taken daily to treat symptoms was 2.5 pills.
Satisfaction with Treatment
Using a 1-10, 1 being not satisfied with success and ten being very satisfied with the treatment, self-rated measures of satisfaction with the success of treatment was reported by the patient was an average of 3. Patents report a reduction in only a very few symptoms that can be treated successfully with mediations, like insomnia with tranquilizers and reduction of anxiety with benzodiazepines.
Side effects
Each patient reported considerable weight gain as a side effect associated with medication treatment, with an average weight gain was about 54 lbs. Three patients report other side effects like shakes and tremors, while two of four patients report symptoms of Tardive Dyskinesia. Each person reports a lower self-image or self-esteem as a result of stigmatizing related to either the disorder or side effects of treatment (e,g weight gain.).
Knowledge of Dissociative Identity Disorder
Participants reported that they have never seen literature on Dissociative Identity Disorder in the doctor’s office, as well as, each person reports seeing at least one dramatized representation of Dissociative Identity Disorder on television. Each patient reports that they have never been asked about and/or spoken with by any doctor about dissociative symptoms.
Discussion
We expected to find patients with low satisfaction in treatment success rates and higher than normal levels of dissociative symptoms. We expected to see this result because we were specifically looking for them based on the presenting symptom complex found in the literature. We sought to find these people only to briefly demonstrate the validity of the conclusions and assumptions drawn from the literature. This was to hopefully demonstrate not only how easy it is to screen for a referral, but that many people are unaware of their dissociative symptoms and have not been screened before.
In light of the fact, that I am an undergraduate student with limited time and resources to complete this study, we note that this literary review was with limited access to all literature available at the time of this review. The study was also done with a limited amount of participants that were selected based on current diagnosis, success rates, and how well they fit proposed presenting symptom complex of someone who has an undiagnosed dissociative disorder. A total of only 4 participants, one man, and three women were interviewed using the DES and an experimental questioner to briefly access the accuracy of some of the conclusions made in this paper. While this selection of participants may appear bias, this study serves the purpose of briefly demonstrating that patients are unaware of the true presentation of dissociative symptoms, patients have been diagnosed or treated for a mental illness and have not been evaluated for a dissociative disorder (e.g. they have not been interviewed, questioned, or treated for these dissociative symptoms), these patients may have an undiagnosed dissociative disorder, these patients have sought treatment for a number of years, they are or have been receiving medications that cause the side effects, and are unsatisfied with treatment results - which were all conclusions drawn from the review of literature.
We hope to demonstrate a need for further study to evaluate the impact of misdiagnosis, medication treatment and success rates among this group of patients and advocate for educators, care providers, patients and society to be better educated on the true presenting symptom complex of Dissociative Identity Disorder. We believe the evidence supports the conclusions drawn from the literature, there are patients in treatment for other mental disorder that has not been interviewed or evaluated for dissociative symptoms, yet clearly have untreated dissociative symptoms present and low success rates on medication treatment. Since patients treated for dissociative identity symptoms often see a reduction in symptoms with treatment and dissociative symptoms will not be alleviated by medications treatment alone (Steinberg, get date), it is reasonable to presume that patients with undiagnosed Dissociative Identity Disorder who are not receiving treatment or who are receiving the wrong treatment will not see a reduction of symptoms.
The symptoms of Dissociative Identity Disorder are often hidden even from the patient, suffering is evident, but it's hard to articulate into words and often presents with a co-morbid diagnosis and/or symptoms such as depression, anxiety, or substance abuse. Therefore, skilled doctors and an accurate diagnostics test, like the SCID-D, are needed to accurately diagnose a dissociative disorder. While these things may be true, it is also true that anyone who is keenly alert and educated in dissociative disorders can easily give any other person who is suffering silently a DES screening and a referral to a doctor.
While more research is needed to determine the true impact of misdiagnoses in this group of patients, the study clearly demonstrates that this unexplored area needs to be evaluated more thoroughly with the intent of improving the diagnostic criteria, clinician and patient awareness, and improving patient treatment success rates. Raising awareness in society about misconceptions portrayed by media, presenting the public with the true image of Dissociative Identity Disorder, will likely increase the number of patients reporting dissociative experiences. For those who worry about fake or malingering cases of Dissociative Identity Disorder, one should note, our current diagnostic tools, like the SCID-D, can accurately evaluate and diagnose a person with Dissociative Identity Disorder or other dissociative disorders and other mental illnesses. However, this is only true if the person is evaluated for these hidden symptoms, which are routinely not asked about on other mental health questioners.
It is important to make sure that if we are the authority on the subject, as in, we are the doctor or we are a care provider, that we are providing the care that will best suit the patient; this includes an accurate diagnosis and the right treatment for Dissociative Identity Disorder when needed. Revisions to admittance tests and clinical procedures would likely give way to many of these patients being treated sooner. As caregivers, it is our duty to maintain our education on matters so pressing as one’s mental health, giving patient’s antipsychotic medication should not be done so lightly or without further evaluation, as there are many possible side effects associated with these medications that could further scar these already fragile minds.
As Dissociative Identity Disorder has been the subject of review for almost 200 years, I think it is time that we start to evaluate our patients for this disorder more thoroughly, accepting that despite its unknown origin and surrounding controversy many patients are suffering from symptoms and need treatment. I feel given the evidence presented within the literature, there is clearly a need within the mental health field for improved diagnostic criteria and procedure. I can only hope that my review clearly presents why higher levels of awareness about Dissociative Identity Disorder is needed among society as a whole, but especially the doctors and clinicians.
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