Recovering identity: a qualitative investigation of a survivor of dissociative identity disorder.
The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR; American Psychological Association [APA], 2000) identified Dissociative Identity Disorder (DID) by the following four criteria: (a) There must be evidence of two or more distinct and enduring personality states, defined as a unique way of perceiving, relating, and thinking about the environment and self. (b) At least two of the personality states described must repeatedly control the individual's behavior. (c) The person experiencing the alter personality cannot recall information for significant periods of time that are not better explained by ordinary memory loss. (d) The first three criteria are not better explained by the consumption of a psychoactive chemical or by a general medical condition.
With the advent of the DSM-5 in May 2013 (APA, 2013), several of the criteria for diagnosing DID remain the same, but the DSM-5 Dissociative Disorder Work Group proposed changes that will help clinicians to diagnose DID more accurately (APA, 2012). The new diagnosis for DID has five criteria rather than four. The first is a more complete description of personality states, defined as "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" (APA, 2013, p. 292). Furthermore, these symptoms can be observed by either the person experiencing possession or by external witnesses. The second criterion, consistent with the current diagnosis, requires a loss of memory not better accounted for by normal forgetfulness. The third requires the individual to experience clinically significant distress in social, occupational, or other important domains of functioning. The fourth prohibits diagnosis if the client's experience is part of an accepted religious or cultural practice (e.g., imaginary friend in childhood). The fifth requires that the symptoms cannot be ruled out as the result of consuming psychoactive substances or a preexisting medical condition.
DID falls in the section of dissociative disorders in the DSM-IV-TR; as the section title suggests, the key clinical feature is dissociation (APA, 2000), which is defined as "a psychological state in which the individual's level of consciousness is altered" and for those who have experienced it, it is described as "being separated from their body, 'zoned out,' floating above or apart from the body, detached" (Stickley & Nickeas, 2006, p. 182). More specifically, dissociation is a "disruption of and/or discontinuity in the normal, subjective integration of one or more aspects of psychological functioning, including--but not limited to--memory, identity, consciousness, perception, and motor control" (Spiegel et al., 2011, p. 826). Although some degree of dissociation is normal and does not contribute to client impairment, it is beyond the scope of this discussion to adequately explain this highly nuanced topic. Generally speaking, however, pathological dissociation is typified as "more pervasive, disruptive, and/ or distressing than normal psychobiological capacities and their failures (e.g., ordinary forgetfulness, absorption in imaginative activities, uncertainty whether one has done something or not, etc.)" (Spiegel et al., 2011, p. 827). For a more thorough discussion of the differences between normal and pathological dissociation, see Dalenberg and Paulson (2009).
The number of separate identities reported by those who have stated they have DID range from 2 to 100, with the average number of evolved alters being approximately 10 and the average age for development of separate alters beginning about 6 (National Alliance on Mental Illness [NAMI], 2000). Alter identities may exhibit different physical and medical conditions, relationship preferences, thoughts, feelings, and behaviors. Diagnosis of DID accounts for an estimated 1% of the general population and 1% to 20% of inpatient and outpatient psychiatric populations (Brand & Loewenstein, 2010). However, estimates of the number of alters per individual and the number of individuals with DID are questionable given the difficulty of diagnosing the disorder and pinpointing alter shift (Spiegel et al., 2011). Trauma is especially prevalent in individuals diagnosed with DID; about 71% have experienced childhood physical abuse and 74% sexual abuse (Foote, Smolin, Kaplan, Legatt, & Lipschitz, 2006).
Survivors of DID face several challenges, among them (a) media-induced misperceptions of DID, (b) decreased functioning, (c) problems with intimate relationships, and (d) decreased quality of life. To combat these challenges both intra-personally and inter-personally, alters need to communicate with one another and cooperate on an overall goal for the individual. As a means for managing the disorder and promoting a better quality of life, DID survivors are encouraged to strengthen self-awareness through reflection of intra-personal interaction between alters (Middleton, 2005; Rothschild, 2009). A study investigating the expert practices of clinicians who specialize in DID treatment found that therapy with DID clients generally moves in three distinct phases that have the following five stages (Brand et al., 2011):
* Stages one and two are characterized by a high level of focus on therapeutic alliance, both establishing and repairing the relationship when ruptures occur, and on emotional regulation.
* Experts agreed that stage three continues to focus on relational-based interventions, but it also incorporates a high level of trauma reprocessing, including abreaction and exposure-based interventions.
* Stages four and five are typified by the cessation of trauma processing, although experts continue to use relational-based interventions and address emotional regulation.
Clinicians who treat dissociative disorders are also faced with challenges because these disorders are a symptomatic enigma (Dell, 2009; Gillig, 2009). For instance, individuals with dissociative disorders suffer from a variety of psychiatric syndromes that may include post-traumatic stress disorder, depression, anxiety, personality disorders, relational problems, substance abuse, and eating disorders, as well as such at-risk behaviors as suicidality (Brand et al., 2009). Adding confusion to our understanding of the disorder is that studies describing successful treatment of dissociative disorders are primarily clinical case studies. Most of the research has investigated clinical, primarily inpatient, populations; relatively few studies have described the lives of individuals with dissociative disorders in natural settings or outpatient counseling. There is also a dearth of research using a phenomenological approach that investigates the subjective experience of survivors of DID who are not currently hospitalized and how--from their perspective (rather than the clinician's)--their diagnosis has affected their lives. This suggests a gap in the literature in terms of individuals who have found effective ways to reduce their distress and manage their disorder in their everyday lives, as is the case of the participant in this study. Clearly such individuals may provide significant insight into both the subjective experience of DID and how it can be managed successfully. Furthermore, because understanding and identifying mental disorders is essential to ethical practice (American Counseling Association [ACA], 2005, Standard A.2.b, Standard E.5; American Mental Health Counselor Association [AMHCA], 2010, Standard D.2), counselors need some working knowledge of DID even if they do not plan to specialize in treatment of this rare disorder, so that they can capably refer clients to more experienced counselors.
Despite the promise that the narrative method has for informing counseling practice (Creswell, Hanson, Plano Clark, & Morales, 2007), we found only one study that had used this method with an individual who had DID (Stickley & Nickeas, 2006). The purpose of the current study was to add to the literature by exploring the subjective experience of a DID survivor through interviews. The narrative examines the history of the survivor, her present experience as it relates to DID, and the meaning she has drawn from her experiences with the disorder. Two research questions guided the investigation: (a) What is the subjective experience of a survivor of DID? (b) How does DID affect the quality of a survivor's life?
This study used a narrative method to extract meaning from the participant's story (Hays & Wood, 2011). "Narratology" consists of "gathering data through collecting [the participant's] stories, reporting individual experiences, and chronologically ordering the meaning of those experiences" (Creswell et al., 2007, p. 240). The form of the narrative (beginning, middle, and end) is therefore essential to the meaning of the participant's story. Furthermore, narrative research has promising potential to inform the research on and practice of counseling, given its similarity to the therapeutic process--counselors help their clients by hearing and understanding their stories (Creswell et al., 2007; Hays & Wood, 2011). However, Hays and Wood warned that researchers who use narratology should exercise caution in determining the climax and conclusion of the participant's story. Unlike grounded theory, narratology is not guided by saturation, which makes it difficult for researchers to decide where and when to end their inquiry. To address this challenge, we used Seidman's (2006) three-part, phenomenological-based interviewing strategy to structure the investigation. Seidman's method is consistent with the philosophy of narratology in that it organizes the collection of data on the participant's past, current, and future experience of phenomena being investigated.
The Seidman (2006) method gives participants an opportunity to reconstruct their experiences with phenomena under investigation and is not limited by topic. It is also philosophically consistent with the purpose of narratology--the chronological collection and ordering of the subject's experiences in order to derive meaning from the form of the story (Hays & Wood, 2011). Three of us interviewed the subject separately in secure locations within a large southeastern research university. Consistent with the Seidman (2006) method, the interviews took place at one-week intervals to allow the participant ample time to reflect upon her disclosures, thereby adding depth to each subsequent interview without losing the story line. The interviews focused on the following domains in chronological succession: (a) detailing the context of the participant's history with DID, (b) reconstructing the details of her present experience with DID, and (c) reflecting on the future and the meaning of her experience as they relate to DID. Since the purpose of each interview was to investigate a different aspect of the participant's experience with DID, we drew up a semi-structured interview protocol to ensure that questions asked were not redundant between interviews. All three interviews were audiotaped and transcribed for detailed analysis.
The participant was a 35-year-old Caucasian female with a history of DID. She was recruited by a member of the research team who had previously partnered with her to advocate for survivors of DID. Because of this long-standing relationship with the participant, we were able to verify the authenticity of her experiences with the disorder and obtain reliable interview data. We obtained informed consent from the participant and approval from the Institutional Review Board to conduct the interviews and publish the findings.
The three-step data analysis consisted of deriving codes, categories, and themes from the interview transcriptions. This procedure is common to many approaches to analyzing qualitative data (Creswell, 2007). As a validity check, each interview was analyzed by researchers other than the one who conducted it, and initial codes were entered into three separate coding documents. After each transcript was coded, code documents were compared and redundant codes combined. From the final list of codes, we created the categories that emerged by clustering codes under new category names. From this list, we identified themes that tied the categories together. The final themes identified were therapeutic outcomes, chronology of DID, and misperceptions of DID.
Through reflexivity, researchers can position themselves in relation to the study they are implementing by becoming aware of their subjectivity and harnessing its power to contribute to rather than detract from the research findings (Creswell, 2007; Glesne, 2006). As a group that has collaborated on previous investigations of the experiences of survivors with DID, we are heavily invested in both the research and the practice of helping people with this rare disorder. We acknowledge a possible bias that may be a source of both great strength and potential weakness in terms of this study's findings. The narrative research methodology we used corresponds well to previous therapeutic training, which allows us to generalize our skills as practitioners into the interview process. Since each researcher was first a practitioner, for instance, there was potential for each of us to experience a blurring of roles and act as counselor rather than researcher. Therefore, we acknowledge the potential that our bias to help the client could have overshadowed our desire to represent the data authentically.
We also have diverse backgrounds of age, gender identity, ethnicity, sexual orientation, geographical origin, education, and family upbringing. Our diversity allowed us to bring in-depth perspectives to the process of data collection, analysis, and understanding our findings. However, the potential for personal bias was ever-present. Although each researcher has had extensive training in understanding and owning personal values, experiences, and perspectives, these may still have influenced this study's findings at some point.
Threats to Validity, Verification Strategies, and Ethical Issues
Both Creswell (2007) and Glesne (2006) suggested strategies that can be used in qualitative research to counteract personal biases and bolster the authenticity of data collection, analysis, and findings. For purposes of validity and verification, we employed researcher reflexivity, investigator triangulation, and an external auditor. We used reflexivity by articulating individual positions and continuing to reflect on personal biases throughout data collection and interpretation.
In terms of triangulation, three different researchers conducted the interviews. Seidman (2006) stated, "Though [ interviewers] may be disciplined and dedicated to keeping the interviews as part of the participant's meaning-making process, interviewers are also a part of that process" (p. 22). Having different interviewers afforded each of us the opportunity to have first-hand experience with the participant and her story. Furthermore, after collecting the interview data, we traded transcripts and analyzed interviews we had not personally conducted. The combination of personal experience in interviewing and analyzing an interview by someone else helped to balance each researcher's perspectives on the participant's process of making meaning. Although we have already suggested that having three interviewers helped to add a layer of investigator triangulation to the study, we acknowledge this strategy introduces a potential for discontinuity between interviews. Interviewing relies on the strength of the relationship between interviewer and participant to foster self-disclosure and obtain rich qualitative data for analysis (Seidman, 2006). Using different interviewers may have limited the depth of disclosure by causing our participant to spend more time warming up in interviews two and three than if there had been only one interviewer.
Last, our research team included an external auditor who is an expert in DID treatment with three doctoral-level degrees, one of them a medical degree in psychiatry. The auditor's tasks were adapted from Consensual Qualitative Research Methodology (CQR; Hill et al., 2005): review of both the three transcribed interviews and the findings and suggestions for revisions when our interpretation of the data seemed inaccurate. The auditor provided feedback and recommended changes related to the accuracy of the codes and coding system and suggested collapsing certain subcategories and using different terms for certain words to try to better capture the essence of the codes.
A potential ethical concern of this study was protection of the participant's identity during presentation of the findings; since the purpose of the narrative design is to capture the significant details of the participant's life as it relates to DID, there is a danger of publishing information unique to the individual. To protect against that we gave the participant a fictitious name, Sophia, and will generalize otherwise specific details of her disclosures that could threaten confidentiality.
The coding process of the interviews resulted in three overarching themes: outcomes, chronology of DID, and misperceptions of DID. Each contains categories with codes embedded from all interviews conducted with Sophia. As noted, lists of the initial codes, categories, and themes were created after reviewing and analyzing the data against a small list of codes drawn from previous studies. The results are presented thematically and the categories that comprise each theme are described in detail.
The outcomes theme had two categories, positive and negative.
Positive outcomes. Although DID was a difficult disorder for Sophia to cope with and stemmed from negative childhood events, the data revealed many positive outcomes, such as self-efficacy, empowerment, and positive relationships (see Table 1 for the full code list). With regard to self-esteem, Sophia mentioned, "I think a lot of that helped me to have better self-esteem and a better outlook on myself in general," which indicates that her self-confidence increased over time during therapy.
Sophia reframed many of the symptoms she currently experiences as challenges, stating "I don't know if I have symptoms anymore because ... that just implies that you have an issue. But I don't think I have symptoms, I just have my challenges." Learning to normalize her symptoms as challenges helped Sophia to see her experiences with DID as something to be organized and dealt with rather than as a sickness to be cured. She further emphasized, "Those challenges, I know what they are, so it's not like a symptom, it's just a part of living with DID."
Strong relationships were another positive outcome of DID for Sophia. Through the process of finding her own healing through counseling, Sophia has been able to share her story with other people. She found that after revealing her diagnosis and experiences to people they sometimes told her secrets of their own, including their personal struggles with mental illness. As a result, Sophia began to experience a level of intimacy in her relationships that surprised her. She stated:
I know so many of my friends' secrets that I never thought I would have ever known or care to know, but it just made them feel that much more connected to me, which is why I think I have the strong relationships that I have.
By sharing her story with other people Sophia was able to not only maintain positive relationships, which had been a major difficulty for her after the trauma and dissociation she experienced, but was also able to empower others to find resolutions to their own life circumstances and difficulties. In addition, after telling her closest friends about her life with DID, she noticed that she no longer had to explain some of her idiosyncrasies to them because they already understood them, and added, "That's why it's so much easier that she knows I have DID because she absolutely understood what was going on."
Negative outcomes. Goping with DID did create many obstacles for Sophia, among them desperation to be believed by others, especially therapists. Sophia mentioned the feeling of hopelessness, for example: "I think through most of the trauma therapy--from the time I was diagnosed, the stabilization, and the trauma processing--I think through that whole time I was in an entirely hopeless state." Another problem was the difficulty of establishing relationships, especially after beginning therapy. She stated that becoming "physically and emotionally intimate is when the floodgates opened," often resulting in her own retraumatization and distancing herself from possible relationships.
One of the greatest fears Sophia dealt with during her experiences with DID was of being rejected by other people because of her diagnosis, especially by friends, family, and her profession. She recounted morose visions in which she would be told that she could no longer be a teacher because her condition made her unstable and therefore unsuitable to work with minors. That fear was sometimes agitated when parents from her class would ask her for more information about her diagnosis, believing "they would not allow me to teach their children and they would have these preconceived notions and they would take their children out of my class."
Chronology of DID Theme
The chronology of DID theme covered four categories: abuse history, characteristics, therapeutic implications, and pivotal moments.
Abuse history. From the age of 2 on Sophia had a difficult and abusive childhood, with repeated sexual, physical, and emotional abuse by different family members. Her DID symptoms appeared during this time as a protective function that allowed her to "run away both physically and mentally." When discussing memory of the abuse, she stated "I don't experience them as my own experiences ... I know that they happened, but they happened in different parts of me." The abuse continued until Sophia attempted suicide and disclosed her abuse to a mental health worker. She was then placed in the household of a non-offending family member, where the quiet atmosphere facilitated her recognition of the different voices occurring within her, periods of time that were missing, and mood swings.
Characteristics. The characteristics of Sophia's DID reflect her symptoms, such as alter presence and roles, decision-making, and co-occurring symptoms. These run chronologically, with past symptoms and characteristics discussed first, flowing into current characteristics. Discussing the origin of her alters, she stated, "I always remember the main alters that I have. I can remember them forever....I can clearly remember talking to them before I was in kindergarten," and "I don't remember not hearing them--I didn't know what it was, of course." Sophia felt her symptoms were largely unnoticed by others, with a few exceptions: "People thought I was very moody because my emotions were so random and off the wall and constantly changing," and "people thought I was a little spacey."
Sophia's symptoms were dominated by blurred time and feelings of forgetfulness: "I was the sticky note queen because I couldn't remember anything." Sophia also discussed feeling shame and isolation, having "a lot of the 'what's wrong with me' kind of feelings, like I must be flawed or I must be crazy, or why am I acting this way." The DID symptoms were accompanied by such conditions as an eating disorder, drug and alcohol abuse, and suicidal ideation.
Although the alters most likely always had roles, once in therapy Sophia was able to delegate and organize alters to keep track of different jobs: "The caretaker made sure that we remembered to brush our teeth, and that we ate breakfast and brushed our hair." Furthermore, the genders of the alters complement their unique personas. For instance, Sophia explained that the alter she assigned the role of "protector" is known for his intense anger. Sometimes his anger will break into consciousness, as when she is having a minor conflict with her partner or when she perceives a danger in a given social circumstance.
Currently, Sophia described herself as being "co-conscious," meaning she is able to communicate with her alters without dissociating from the here and now, although this was not always the case. Moreover, it was only after counseling that Sophia became able to recognize her alters' distinct personas. Through the course of her therapy, Sophia was able to identify seven alters. With the help of her counselor, she integrated the seven into five, only to discover two more later. Sophia mentioned that one of the greatest difficulties for her is to negotiate the competing interests of each alter. This is most prevalent when she needs to make a decision and it can make even the simplest task complex. She explained:
There is technically still seven of me and trying to make a decision with seven people is hard. So everything just takes longer, like what to wear in the morning, what to make for lunch, and what we're gonna get at the store, what we're gonna get at the restaurant.
Therapeutic implications. Sophia searched several years to find a counselor who understood her symptoms. This resulted in codes for ineffective and
effective therapy. Due to the variety of her symptoms, accurate diagnosis puzzled not only her but also the practitioners from whom she sought help. For example, in college, "I had this same depression and same, like, confusion and hearing things, and people saying I did things that I didn't do and all those same panic attacks and nightmares and random things." The symptomatic confusion was clear in the plethora of diagnostic labels she encountered as she sought help: "I was diagnosed with everything. I was schizophrenic, schizoaffective, borderline, bi-polar, ADHD." Clinicians perceived her unwillingness to accept these labels as evidence of denial; one clinician said she was simply "diagnosis shopping." Although finding a counselor with the appropriate knowledge for treating DID resulted in the recovery she is currently experiencing, Sophia categorized the bulk of her therapeutic experiences negatively. For instance, "One counselor told me I would grow out of it. Not to worry about it, I'll just grow out of it." After multiple misdiagnoses, incorrect medication prescriptions, and a general lack of understanding of dissociative disorders, Sophia became desperate to be believed and understood.
Once Sophia found an effective counselor, things began to change for her. This counselor had experience with dissociative disorders and set up a treatment that began with organizing her alters:
Figuring out who the voices were ... helped so much, because it just made everything calmer, because it wasn't just this ... ball of mess. We had names for everybody; we knew what everyone's job was ... we created guidelines so that it wasn't just everyone screaming all the time.
Once Sophia had a calmer inner environment, the counselor began processing her childhood trauma by, e.g., "looking at each alter, and what memories it had, and what experiences they had." This intensive process consisted of three-hour sessions twice a week for a month. Sophia described this part of the counseling as going "back into the valley of the emotion ... to wrestle with all the pain that in some ways you have dissociated your entire life." After this therapy she came to the realization that she is particularly susceptible to dissociation from certain situational triggers, such as seeing a scary movie that involves violence.
Sophia's counselor played a pivotal role in her recovery not only by being the "right fit" but also through support and reassurance. Sophia stated that her counselor reassured her with statements such as "I believe in you" and "Don't give up" when the trauma processing became extremely difficult. Although Sophia is currently stable in her diagnosis, she retains five alters: "The remaining five of us are still present ... but we function as one unit, so we're coexisting." She described her current therapy as a continual process where "there's a constant revisiting."
Pivotal moments. The predominant pivotal moment Sophia identified repeatedly was finding a counselor who understood her condition: "The defining moment of my life was [the counselor] giving me that diagnosis [DID]." She went on to say, "No one ever thought to ask those questions--I didn't even know that people knew to ask those questions ... I really felt like 'Oh my god, this woman actually understands everything I'm saying.'" The feelings of understanding and acceptance facilitated Sophia's healing so much that "It was the first time that I felt hope that I could get better."
Misperceptions of DID Theme
The misperceptions of DID theme has only one category: media portrayal. Though it had only one category, we chose to give the theme its own designation because of its influence in societal stigmatization and misunderstanding of survivors of DID, which Sophia emphasized during her interviews. She mentioned, "If I can get one message, it's ... erase whatever you've seen on TV because that's not what it is." She explained that media portrayals of DID are primarily for entertainment value. For instance, even when her symptoms were at their worst, most people could not tell that she had a disorder. Sophia said,
The media is portraying an image. But they're portraying the image that we give them. Because people like me, other people who have DID, are too afraid to come forward and say that they have DID because they are afraid of the repercussions. So the media is only left with the exploitation of the people who like 15 minutes of fame, I'll do anything you want, parade my alters--those are the kind of people they're showing because those are the people they're getting. And it's creating this vicious circle.
She cited depictions of DID, including movies and television shows, as propagating myths about the disorder. She contended that, contrary to many of these popular depictions, most people with DID are not unemployed or unstable and do not rapidly switch between "crazy" alters. On the contrary, she stated, "People with DID work full-time, they're married, they have children, they're just regular people. Who also happen to have DID."
SOPHIA'S STORY AND DID RESEARCH
We found several consistencies between the themes in Sophia's story (e.g., outcomes, chronology of DID, and misperceptions of DID) and prior research. In line with the traumegenic theory of DID (Cohen, 2004; Gleaves, May, & Cardena, 2001), Sophia's symptoms (amnesia and alter presence) manifested after she experienced severe physical, sexual, and emotional abuse in early childhood. Like many others with DID (see NAMI, 2000), Sophia's symptoms also began at a relatively young age, before she entered kindergarten. Her experiences of successful counseling closely resembled the report of what expert clinicians of DID treatment have found effective (Brand et al., 2011). Most notably, both Sophia's story and expert responses suggest that early in treatment it is important to focus on establishing a strong therapeutic alliance and repairing any ruptures that may occur. On the other hand, the bizarre symptomatic presentation of DID confounds some clinicians and, consistent with Sophia's experiences of misunderstanding by mental health professionals, can lead some to question the validity of the client's experiences (Gillig, 2009). In Sophia's case, misunderstanding from the mental health community was an obstacle to resolution of her distress.
Two important limitations to this study require explanation:
* Qualitative research is host to many strategies for collecting data, such as interviews, field observations, and documentary and visual data (Polkinghorne, 2005). The strategy this study used was transcribed interviews. Without other forms of collecting data, this study is limited to the self-disclosure of the participant. Furthermore, the depth of disclosure by participants is limited to the trust they have in the relationship with the interviewer (Seidman, 2006). We may have missed potentially valuable information that could have been supplemented through another form of data collection. To account for this limitation, we used a rigorous interviewing technique (see Seidman, 2006) to both provide researcher triangulation and obtain contextualized data from within the participant's life story.
* The purpose of this narratology was to understand the subjective experience of one survivor of DID. We caution against generalizing these findings to other individuals with DID. It is not the purpose of qualitative research, especially narratology with one participant, to generalize findings to the population sampled. Moreover, the manifestation of DID within each individual is unique, rendering any attempt to generalize its manifestation in one person to other clients with DID potentially misleading. However, we believe readers will find commonalities between prior research and Sophia's story, along with those of other individuals with DID they may encounter. Also, we believe that Sophia's narrative can serve as a stimulus for counselors to pursue the topic further as part of their professional development.
IMPLICATIONS FOR MENTAL HEALTH COUNSELING PRACTICE
Taking the limitations into consideration, the findings suggest that Sophia's journey from childhood trauma, the emergence of dissociative symptoms, and her later recovery were a mixture of pain, confusion, fear, and eventually hope. She endured many trials as she sought help for a disorder she did not understand--and, to her disappointment, neither did many of her mental health professionals. However, after finding a counselor who understood her experience, Sophia was able to find a sense of stability in her life that helped her to not only survive but also thrive. Sophia's narrative has numerous implications for counselors: (a) being a knowledgeable and caring counselor is of utmost importance when dealing with DID; (b) sharing experiences of DID with a counselor and later with trusted friends may help clients resolve DID symptomology; and (c) counselors may have an integral role in promoting accurate perceptions of clients with DID in contrast to media portrayals.
For Sophia, finding a knowledgeable, empathic counselor was pivotal to her healing. Sophia described her story as a testimony to how effective therapy can make a difference in a person's life. Consistent with expert descriptions of effective DID treatment (Brand et al., 2011), Sophia's successful experience with counseling seemed to follow three distinct phases: stabilization, trauma processing, and promoting daily function. Sophia's level of distress stabilized in part with the organization of her alters. Working with her counselor, Sophia assigned roles and tasks to gain control over the manifestation of her alter identities. This seems to be a paradox, but giving the alters control over certain tasks (note-taking, to-do lists, deciding where to eat, etc.) actually undermined their ability to subvert her consciousness during times of distress. As she stated, giving her alters guidelines for communication helped to smooth out each alter's chaotic clamoring for attention. After organizing the role of each, Sophia processed with her counselor the dissociated trauma that each retained. Sophia described the trauma-reprocessing phase of counseling as the most difficult because she had to accept the repressed emotion that each alter possessed and incorporate it into her core identity. These sessions were consistently three hours long. However, after progressing through the proverbial valley of her past abuse experiences, Sophia found significant relief and turned to daily maintenance of her disorder.
Sophia attributed the origin of her disorder to significantly traumatic childhood experiences, which is consistent with epidemiological studies of dissociative disorders (Sat, 2011), saying, "I think it was just a perfect combination of my age, being sexually abused, and my personality type." As a result of her DID, she experienced significant interpersonal isolation. It was particularly difficult to listen to Sophia's description of the lack of understanding and ignorance of the mental health professionals from whom she had sought help earlier. After treatment from counselors who labeled her with a wide range of diagnostic syndromes, including one who accused her of diagnosis shopping, she finally found a counselor who could understand her experience and provide her with hope. With an accurate diagnosis of her disorder, with counseling Sophia experienced significant resolution. However, her experiences of misdiagnosis should motivate counselors to educate themselves about the subtle nuances of DID, given its complex symptomatic presentation (Gillig, 2009) and provide more effective services to clients who may suffer from the disorder. In particular, effective help could be a matter of identifying the disorder and referring clients to clinicians who specialize in DID treatment.
Although DID constitutes a small percentage of the general and psychiatric inpatient populations (Brand & Loewenstein, 2010), facilitating the connection between survivors of DID through support groups or group therapy may help with the resolution of distress. It is significant that after achieving partial healing from the trauma of her childhood, Sophia was able to share her personal story of triumph with other people in her life. As a result, she began noticing that people often reciprocated and told her secrets about themselves she never foresaw knowing. Currently, Sophia derives a great sense of purpose and fulfillment in helping other people like her who struggle to come to terms with DID. Counselors who work with individuals who have DID should recognize the empowering effect that sharing their stories can have on clients, the people in their lives, and others with who may suffer from DID. This would imply that counselors help their clients research resources that relate to DID where clients can find social support when they are ready to reengage in relationships outside of counseling.
Sophia's sense of shame stemming from the social misrepresentation of DID is particularly troublesome. She attributed a significant portion of DID's social stigmatization to popular and misleading depictions of DID in entertainment media. She cited television shows and motion pictures that misconstrue the often-ordinary lives of those with DID. Much like reality television shows, Sophia stated that such portrayals draw individuals seeking attention from sociely who use the disorder as a gimmick. Dell (2009) suggested that exaggerated depictions of DID also mislead clinicians into believing that it is easy to identify the disorder based on alter shift. The reality is that rapid switching between identities is subtler and less common than is portrayed by the entertainment industry. In most cases, in only a small minority of cases does the disorder present so extremely. The unfortunate side effect is that Sophia has felt the stigmatization of such depictions and worries that people in her life will equate her experiences with exaggerated and often fictitious media representations of DID. Counselors and other mental health professionals are in an ideal position to educate and advocate for greater understanding of individuals with DID during individual, couples, and family therapy. CONCLUSION
DID is a rare and complicated disorder, with prevalence estimated at 1% to 20% of psychiatric inpatient and outpatient populations, that often confounds clinicians because of its highly nuanced presentation (Brand et al., 2009; Brand & Loewenstein, 2010; Dell, 2009; Swartz, 2001). Although it is difficult to estimate precisely how many people suffer from DID, it seems clear that some individuals diagnosed with DID have experienced significant childhood physical and sexual abuse (Foote et al., 2006). DID also poses unique challenges for any sufferer, most notably intrapersonal and interpersonal distress or impairment. Furthermore, DID represents a challenge to any clinician because its symptoms are so complex and need specialized treatment.
To help answer our research questions, we used Seidman's (2006) three-part, phenomenologically based interviewing. The participant we recruited was a 35-year-old Caucasian female with a history of DID, whom we named Sophia to maintain confidentiality. After the interviews, we used a variety of verification strategies to refine our interpretation of the data; where appropriate we attempted to let Sophia speak for herself during the presentation of the findings. Sophia's experiences with DID were complex; often we found clear correlations between her experiences and past DID research. Sophia's story comprises three primary themes: (a) outcomes, (b) chronology of DID, and (c) misperceptions of DID.
We identified three implications of the study for the practice of mental health counseling. First, both true caring and specialized knowledge of DID were essential to helping Sophia find resolution. Professional counselors who desire to work with these clients can learn from Sophia's history of misdiagnosis and seek additional training in order to work effectively with this disorder, or at least recognize when to refer clients to counselors who are more familiar with DID. Second, sharing her story with a caring professional helped her open up to people who she felt were trustworthy and as a result helped her to develop relationships and enhance her level of functioning. Finally, counselors can help their clients during individual, couples, and family counseling by demystifying media portrayals of the disorder, which are often inaccurate and exaggerated.
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Jesse Fox is associated with Loyola University of Maryland, Hope Bell with the University of Texas at San Antonio, and Lamerial Jacobson and Gulnora Hundley with the University of Central Florida. Correspondence about this article should be addressed to Jesse Fox, Loyola University Maryland Department of Pastoral Counseling, 8890 McGaw Road, Suite 380, Columbia, MD 21045. Email: jfoxl @loyola.edu.
Table 1. Themes, Categories, and Codes Outcomes Chronology of DID Misperceptions of DID Positive Outcomes Abuse History Inaccurate Media Empowerment History of childhood Portrayal Self-efficacy abuse Increased Characteristics communication Decision making Positive Dissociation relationships Situational triggers High intelligence Alter roles Hope Depersonalization Empowering others Alters present Normalization Confusion over symptoms Negative Outcomes Fear of disclosure Therapeutic Relationship Implications difficulties Effective therapy Suicidal ideation Ineffective therapy Defense mechanism Desperation to be Pivotal Moments believed and Diagnosis as understood life-changing False recovery Isolation Undefined Spirituality
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|Author:||Fox, Jesse; Bell, Hope; Jacobson, Lamerial; Hundley, Gulnora|
|Publication:||Journal of Mental Health Counseling|
|Date:||Oct 1, 2013|
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