Why the controversy?

According to Bethany Brand, Ph.D, a professor of psychology at Towson University and an expert in treating and researching dissociative disorders, there are several reasons. DID is associated with early severe trauma, such as abuse and neglect.

This raises the concern over false memories. Some people worry that clients may “remember” abuse that didn’t actually happen and innocent people may get blamed for abuse. (“Most people with DID don’t forget all their abuse or trauma,” Brand said; “sufferers may forget episodes or aspects of some of their trauma,” but it’s “fairly rare not to remember any trauma at all and suddenly recover memories of chronic childhood abuse.”) It also “pries into families’ privacy,” and families may be reluctant to reveal information that might put them in a negative light.

In the mental health field, myths persist because of a lack of education and training about DID. These myths create a mystique around the disorder and perpetuate the belief that DID is bizarre. For instance, one prevalent myth is that there are “different people inside someone with DID,” Brand said. Adding to the problem are poorly trained therapists who promote atypical treatments that aren’t supported by the expert clinical community. “Mainstream, well-trained dissociative experts don’t advocate using bizarre treatment interventions. Rather, they use interventions that are similar to common ones used in treating complex trauma,” she said.

What Is DID?

DID typically develops in childhood as a result of severe and sustained trauma. It’s characterized by different identities or “self-states” (there is no integrated sense of self) and an inability to recall information that goes beyond forgetfulness. Prone to amnesia, people with DID sometimes “can’t remember what they’ve done or said,” Brand said. They have a tendency to dissociate or “space out and lose track of minutes or hours.” For instance, it’s “common [for people with DID] to find they’ve hurt themselves [but] don’t remember doing that,” Brand said. The loss of memory isn’t due to drugs or alcohol, but a switch in self-states, she noted. Here’s a list of the DSM criteria for DID.

7 Common DID Myths

It’s safe to say that most of what we know about DID is either exaggerated or flat-out false. Here’s a list of common myths, followed by the facts.

1. DID is rare. Studies show that in the general population about 1 to 3 percent meet full criteria for DID. This makes the disorder as common as bipolar disorder and schizophrenia. The rates in clinical populations are even higher, Brand said. Unfortunately, even though DID is fairly common, research about it is grossly underfunded. Researchers often use their own money to fund studies or volunteer their time. (The National Institute of Mental Health has yet to fund a single treatment study on DID.)

2. It’s obvious when someone has DID. Sensationalism sells. So it’s not surprising that depictions of DID in movies and TV are exaggerated. The more bizarre the portrayal, the more it fascinates and tempts viewers to tune in. Also, overstated portrayals make it obvious that a person has DID. But “DID is much more subtle than any Hollywood portrayal,” Brand said. In fact, people with DID spend an average of seven years in the mental health system before being diagnosed.

They also have comorbid disorders, making it harder to identify DID. They often struggle with severe treatment-resistant depression, post-traumatic stress disorder (PTSD), eating disorders and substance abuse. Because standard treatment for these disorders doesn’t treat the DID, these individuals don’t get much better, Brand said.

3. People with DID have distinct personalities. Instead of distinct personalities, people with DID have different states. Brand describes it as “having different ways of being themselves, which we all do to some extent, but people with DID cannot always recall what they do or say while in their different states.” And they may act quite differently in different states.

Also, “There are many disorders that involve changes in state.” For instance, people with borderline personality disorder may go “from relatively calm to extremely angry with little provocation.” People with panic disorder may go “from an even emotional state to extremely panicked.” “However, patients with those disorders recall what they do and say in these different states, in contrast to the occasional amnesia that DID patients experience.”

As Brand points out, in the media, there is a great fascination with the self-states. But the self-states are not the biggest focus in treatment. Therapists address clients’ severe depression, dissociation, self-harm, painful memories and overwhelming feelings. They also help individuals “modulate their impulses” in all their states. The “majority [of treatment] is much more mundane than Hollywood would lead us to expect,” Brand said.

4. Treatment makes DID worse. Some critics of DID believe that treatment exacerbates the disorder. It’s true that misinformed therapists who use outdated or ineffective approaches may do damage. But this can happen with any disorder with any inexperienced and ill-trained therapist. Research-based and consensually established treatments for DID do help.

The International Society for The Study of Trauma and Dissociation, the premier organization that trains therapists to assess and treat dissociative disorders, features the latest adult treatment guidelines on their homepage. These guidelines, which Brand helped co-author, are based on up-to-date research and clinical experience. (The website also offers guidelines for kids and teens with dissociative disorders.)

Brand and colleagues recently conducted a review of treatment studies on dissociative disorders, which was published in the Journal of Nervous Mental Disease. While the reviewed studies have limitations—no control or comparison groups and small sample sizes—results revealed that individuals do get better. Specifically, the authors found improvements in dissociative symptoms, depression, distress, anxiety, PTSD and work and social functioning. More research is needed. Brand along with colleagues from the U.S. and abroad are working on a larger scale study to test treatment outcomes.

This is the first image that entered my mind as I began to read Coping with Trauma-Related Dissociation.  Following that were images from the movies Sybil and The Three Faces of Eve.  After not many pages into the book came the realization that dissociative identity disorder, the subject of this book, is what had been portrayed in those movies.  “Dissociative parts of the personality are not actually separate identities in one body, but rather parts of a single individual that are not yet functioning together in a smooth, coordinated, and flexible way.” 

In a collaborative effort by authors Suzette Boon, Ph.D.; Kathy Steele, M.N., C.S.; and Onno van der Hart, Ph.D., patients and their therapists are presented with a skills-training course as another avenue to travel in the treatment of dissociative identity disorder. 

The book is aimed specifically at patients with the disorder and the authors note that it is not intended to be used by anyone who is not currently in therapy even though the content may be helpful on its own.  While it can be utilized in a one-on-one session between a patient and therapist, the skills training was designed to be used in group sessions led by two trainers with a predetermined number of participants that have already been assessed, diagnosed, and are in current treatment for the disorder.

Coping with Trauma-Related Dissociation is divided into eight parts, logically progressing from understanding dissociation and trauma-related disorders, to initial coping skills (reflection), improving daily life (sleep; a healthy daily structure; free time and relaxation), coping with traumatic triggers and memories, understanding emotions and cognitions (core beliefs, cognitive errors), advanced coping skills (anger, fear, shame and guilt, needs of inner child parts, self-harm, inner cooperation), and finally to improving relationships (isolation, loneliness, learning to be assertive, and setting healthy personal boundaries).  Each chapter begins with an agenda so that everyone knows upfront what to expect from the session.  Homework assignments close out each chapter and “are a central part of the training course, because consistent practice is the tried and true way to learn new skills.”  Awareness exercises and imagery exercises are presented throughout to help the patient effectively use what they are learning.  Whereas the majority of the book speaks directly to the individual, the last part focuses on group trainers and contains the necessary information and guidance for assembling and conducting these skills-training groups.

Coping with Trauma-Related Dissociation is almost certainly not the kind of book a casual reader would pick up at the bookstore or library, but may do so out of curiosity nonetheless.  Being neither a patient nor a therapist, it is with some hesitation that I attempt to conclude whether or not Coping with Trauma-Related Dissociation hits its intended mark. With that being said, it is from the perspective of an interested reader only that the following observations are offered, based on the knowledge gained about the disorder by reading this book.

For someone with dissociative identity disorder, having to essentially assume the role of referee with “all the different aspects of personality” on a daily basis would seem to be emotionally demanding.  Add to that the tasks of reading this book and completing the in-depth homework assignments, the emotional demand could be stressful and overwhelming if it were not for the consistent manner in which the authors convey their message with thoughtfulness and understanding.  More importantly, they are very careful to not be graphic about any references to trauma included and thereby demonstrate concern for the reader’s fragility by avoiding potential triggers.  “Be patient with yourself and all parts of yourself” seems to be the underlying skill that is woven into the fabric of the training so that healing can progress.  It is difficult to even begin to imagine how demanding it must be to get all the parts to practice patience and work in concert with each other in helping to heal the whole person.

For the therapist who elects to become one of the group leaders of a skills-training course, or chooses instead to use this book in treating a patient, they may be further educated in responding to these individuals in a different manner.  It is a book worthy of their time, whether or not they use it in its entirety, as they may discover an opportunity to modify aspects of their current therapeutic approach by incorporating something from its pages they feel holds promise.

My conclusion is that if skills-training groups start sprouting up and the participants embarking on the journey together find its content important and mutually beneficial then, yes, the authors’ mission has been accomplished.

Coping with Trauma-Related Dissociation – Skills Training for Patients and Therapists
By Suzette Boon, Kathy Steele, Onno van der Hart
W. W. Norton & Company: March 28, 2011
Paperback, 496 pages
$35

One of my dearest friends, Jane Wright, has been gracious enough to write about her Dissociative Identity Disorder in some (very well-received) posts on my blog. So it occurred to me to ask her whether depression played any role in the development of her DID. Her answer? Oh, yeah!

So here’s our kitchen-table interview:

Depression for me has become very complex over the years. It started when I was born to a depressed mother and depressed father. My mother in fact tried to kill herself when I was five. I did not understand what this meant, but the tension and emotion in the house was very clear. This was my real introduction to mental illness.

By age 14, I had developed over a few years what I thought was a run-of-the-mill adolescent depression, suicide attempt and all. After a hospitalization, I was removed from my home to go to a boarding school. That change from a dysfunctional home to a wonderful school brought out the best in me. I no longer felt the utter despair and fear and caution I always had felt with my parents.

Moving on to college was an easy transition for me. I had lived away from home as most of the freshmen had not.
But the depression came on again my junior year. My father died quite unexpectedly. I had been responsible for saving him from each diabetic reaction since I was 10. Perhaps it was I who had failed?

I found myself walking into busy streets in Boston, with no recollection of doing so. It seemed as if my new depression was trying to kill me. I wrote this line in my journal: the little girl has to remember something. I had no idea what this meant. I found myself increasingly nonfunctional.

I was in and out of psychiatric hospitals for two years, while also participating in a day program. My father had become a god to me after his death. He was perfect in my eyes. I refused to acknowledge the heartache and difficulties he had caused. Therapy tried to allow me to find the gray area of his relationship with me. But my depression continued until graduation.

When I moved away from the Boston area where I had lived most of those horrible years, I recovered once again. I found a job, got married and truly believed I would never become depressed again. Unfortunately, mental illness doesn’t go away with a relocation. And there were things I didn’t know at this time, things that would help to explain all my depressions.

I had two boys. When the oldest turned 6, I suddenly found myself depressed again, and hallucinating, and having flashbacks and cutting and burning myself. Many of these injuries were unexplainable to me. And I didn’t believe what I was now remembering. How could I have been abused by my father and not have known it? I thought I was making this all up. I had an active imagination. Frankly, I thought I was crazy.

I sought the help of a psychiatrist. In those days insurance companies allowed him to provide therapy as well as medication management. I became very frightened by these thoughts and memories and my inability to tell what was real, as well of the self-mutilation. I was told the hallucinations could be a side to the depression.

Supported, I crept forward, telling him of my inner turmoil. He discovered and diagnosed me with Multiple Personality Disorder (later to be called Dissociative Identity Disorder or DID.) This depression had become increasingly complicated. I aggressively fought this in an absolute rejection. I did not have alters! It did explain, however, my loss of time over the years, how I did not know of the abuse until my son turned 6 (the age at which I started being abused) and my depressions.

As it finally turned out, I have an alter that deals with depression. Her name is Otter. Amongst other things, she is depressed. I soon felt that when she became particularly depressed I did too. I felt as if this explained my repeated bouts with depression: Otter was causing them. Though, as I looked at them more carefully, I could see that all the depressions have had legitimate reasons other than Otter.

Now I’m suspecting that perhaps as I became depressed Otter then became more depressed. Perhaps it’s her function to somehow hold my depression or shelter me from the worst of it. I had never thought it might work that way. So I am now entertaining this idea, that perhaps Otter has saved me from worse depressions (though they were pretty bad as it was) by taking some responsibility and taking on some of the feelings herself.

I do not yet know how it all works in my head, but now that I have accepted my diagnosis and past, I am willing to explore depression in a new way and the resulting effects it has had on my life.

Thanks yet again, Jane, for sharing so openly!