The book Sybil and the subsequent 1976 movie in which Sally Field portrayed a girl with more than a dozen different personalities were the result of a collaboration between psychiatrist Cornelia Wilbur and author Flora Rheta Schreiber. The goal was to have people better understand a child abuse victim who developed alternative personalities as a coping mechanism.
While the book and movie raised the profile of what is now known as dissociative identity disorder (DID), they also created some significant misconceptions.
“Do people come into my office and switch personalities in a dramatic way, with different voices. Does their makeup suddenly change? No,” said Milissa Kaufman, MD, PhD, about the character Sybil. “It may feel like that to them internally, but there’s no dramatic thing that happens.”
Kaufman, director of the Dissociative Disorders and Trauma Research Program at McLean Hospital and medical director of McLean’s Hill Center, said patients with DID, a form of post-traumatic stress disorder (PTSD), often carry on very normal, high-functioning lives. She pointed to Robert Oxnam, a China scholar and president emeritus of The Asia Society, who shared his life story in the 2005 book A Fractured Mind: My Life With Multiple Personality Disorder.
That is because DID is a coping mechanism, usually brought on by childhood abuse, and is a kind of ingenious, unconscious way of displacing situations onto other aspects of themselves.
“It’s the ‘not me’ phenomenon,” said Kaufman. “Little children have magical thinking. It’s at this age in development where you believe in Santa Claus, or where little children personify stuffed animals. There are displaced thoughts and feelings that are difficult for them, so they are put on these other entities. It’s a normal developmental stage that children go through.”
Where DID veers from “not me” is when abuse—physical, sexual, or emotional—is introduced into their young lives.
“If you’re being abused at night, you think to yourself that can’t possibly be happening. It has to be happening to some other little girl. It’s not me,” she said. “If a little girl is being abused at night and has to wake up the next morning and go to school and do sports and do homework and have to do as much as they can to not have people get angry at them, they displace it onto another aspect of themselves.”
“A child doesn’t have many other ways to cope. They can’t go to their parents, since that is the origin. They feel like there are other people inside of them, and they can’t tell anybody.”
Dissociation can be found in 1-3% of the general population and as high as 20-30% in psychiatric populations, about the same prevalence as schizophrenia, Kaufman said. A 1986 study by Frank W. Putman and others in the Journal of Clinical Psychiatry found the average patient with DID has been in the mental health delivery system for an average of 6.8 years and has received three other diagnoses. This reflected either misdiagnoses or occurrences of other diagnoses or symptoms that delayed an accurate diagnosis.
Dissociation occurs along a spectrum, from “spacing out” while driving and missing an exit to being hyper-focused on a topic. Along the range are memory issues, like gaps in recall, often associated with PTSD. Further along are depersonalization and derealization—which Kaufman described as a profound detachment from sense of self or sense of body, a sensation of being apart from one’s self, perhaps viewing what is happening from a distance.
The furthest end of the spectrum is fragmentation of identity, where “my feelings or my thoughts or my body feel like they don’t belong to me,” she said.
Richard Loewenstein, MD, a psychiatrist in the Trauma Disorders Program at the Sheppard Pratt Health System in Baltimore, noted in a 2018 paper in Dialogues in Clinical Neuroscience that dissociative identity disorders are among the oldest reported psychiatric disorders, with case reports appearing at the end of the 18th century.
In more recent times, DID was viewed as being “rare and exotic,” except during wartime. Yet, the diagnosis was not without controversy, even among mental health professionals, with a history going back to Freud and questions about what real memories are. That was rekindled in the 1980s cases involving child abuse at day care centers in many parts of the country. Among the models developed at the time, one suggested DID could be produced in highly hypnotized, suggestible patients. Rather than simply reveal forgotten traumas, the theory went, hypnosis could be used to implant false memories.
DID can also be wrongly connected to malingering (exaggerated) and factitious (inauthentic) disorders, where patients make claims either with or without a motivation for personal gain. The best-known example of factitious disorder is the severe form once known as Munchausen syndrome.
“That’s not what it looks like,” said Kaufman. “It’s a very real, very well-studied psychiatric disorder.”
“It most often is chronic,” she continued. “It typically is at the hands of a caretaker. It can be sexual abuse, it can be physical abuse, it can be emotional abuse. But generally, people who have DID have had many different types of abuse at the hands of multiple perpetrators.”
The women she works with at the Hill Center usually arrive with histories of childhood abuse, PTSD, co-occurring disorders such as eating disorders, or substance abuse issues. While DID affects men, she believes many are less likely to come forward for help.
“I think there’s even more of a stigma for men to talk,” she said. “It may be that, or a lot of mental health professionals are not trained to ask questions. They may not be on alert for it, because the media depicts women most often as having this disorder, so maybe they don’t even ask.”
DID is also treatable with a three-stage set of professional guidelines established through expert consensus.
The initial stage focuses on stabilization and safety. The goal is to “get things calmed down and life in order. It can take a while for someone to feel comfortable and safe. It can take years.”
Once that is achieved, clinicians move on to the second stage, where the patient begins to process the traumatic events that have affected them. In the final stage, the emphasis is on “getting your life back, mourning what you have lost and moving on without dissociation, learning how to be in the world without dissociating.”
At the same time, scientists are exploring potential biological or genetic links that could predispose a person to DID. Studies to date have shown that in the classic form of PTSD, the brain’s amygdala—which controls the “fight-or-flight” response—is overactive while the prefrontal cortex is not, generating a hyper-aroused state. But in the dissociative subtype of PTSD, Kaufman said, the prefrontal cortex is overactive to the point where a person can be numb and detached.
In fact, she explained, both the amygdala and prefrontal cortex become overactive in patients with DID. “The trauma state in DID looks like classic PTSD,” said Kaufman. “In a numbed state of mind, it looks more like the dissociative subtype, where, the brakes are on too tight.”
Scientists are also looking at the brain’s attentional activation system, how a person concentrates.
“People who are dissociative have a really refined ability to focus attention, particularly in multitasking,” she said, saying researchers are working to understand how the brains of people with DID have a different allocation of resources toward attentional systems.
Finally, there are also studies on potential genetic links.
“You aren’t born with DID, but you can have a genetic predisposition to dissociate, so we are also looking for genetic markers.”
But Kaufman stressed that people with DID should not give up hope.
“It’s treatable. It’s a pretty phenomenal coping mechanism when you are growing up, but it becomes disruptive when you don’t need it anymore.”