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These are just some of the many reasons why Elyse is speaking up. She openly talks about DID to anyone who will listen and discloses her condition to nearly everyone she meets. She speaks out on Tumblr and YouTube, gives lectures at local psychology classes, and is now trying to draw attention to DID through the media.
Over the course of a series of interviews over the last two months, Elyse and the people closest to her told me about the traumas that led to her DID, what it's like to live day-to-day with the condition, how her own system of alters has evolved over time, and why it's critical that people stop dismissing DID as a made-up condition. After all, it's been her reality most of her life.
Every year, child protective service agencies in the United States receive more than 3 million reports of child abuse. In 2012, there were nearly 63,000 documented cases of child sexual abuse, according to US Department of Health and Human Services data. And experts believe that the number of cases reported and investigated represents just a small fraction of the abuse and trauma that children suffer across the country.
"When they are reported, they are not dealt with well," said David Spiegel, associate chair of psychiatry and behavioral sciences at Stanford University School of Medicine and an expert on dissociative identity disorder. Some research has suggested that two-thirds of child trauma cases aren't reported, he said. "These children have to live with it. How do you live with it? ... You act as though it isn't happening or it's happening to somebody else that isn't you."
Cases involving the most severe and disturbing trauma — prolonged physical and sexual abuse by parents, other family members, or caregivers — are especially likely to go unreported. And so children in these cases develop their own ways to survive. "You can't run away. You can't fight it, so you go away in your head," explained Bethany Brand, a clinical psychologist and professor of psychology at Towson University in Maryland, who recently completed the world's largest study on the treatment of dissociative disorders. "That makes it easier to disconnect from the body in pain."
When a young mind repeatedly enters these dissociative states in response to ongoing abuse, the coping mechanism can evolve into DID. "It's an interesting paradox of sort of breaking apart, so that you don't break," explained Janelle Salah, a Berkeley-based therapist who treats DID patients.
Someone with full-blown DID will, in response to all kinds of triggers, frequently dissociate into specific parts, or alters, that can become an integral part of that person's day-to-day life — and can persist after the abuse has stopped.
Brand said that, based on the most comprehensive surveys on the disorder, experts believe that the vast majority of DID patients suffered abuse as children — with some studies suggesting that as many as 90 percent of people with DID experienced sexual or physical abuse during childhood.
A 2006 Journal of Psychiatric Research study concluded that 1.5 percent of the general population has DID. And a 2011 epidemiological overview of DID studies — which stated that "dissociative disorders constitute a hidden and neglected public health problem" — said the disorder exists in 0.4 to 3.1 percent of the general population, and in roughly 5 percent of psychiatric patients. That study also stated that dissociative patients are more likely to report childhood psychological trauma than people suffering from any other psychiatric disorder.
People with DID also are often not diagnosed, experts say. That's partly because many sufferers also have other mental health disorders related to their abuse — such as posttraumatic stress disorder, anxiety, and depression — which can make DID harder to identify. And as a complex coping mechanism, DID helps people conceal their trauma and pain from the people around them, which can also make it difficult to recognize. (Elyse explained it to me this way: "The main purpose of DID is to hide ... and to act as if everything is normal.")
There's also a notable lack of research and consensus on DID in the field of psychology. Brand recently did a search for studies on the treatment of dissociative disorders since 1950 and found a total of only 151 research articles — an incredibly small number compared to papers on the treatment of schizophrenia (8,124), bipolar disorder (3,785), and posttraumatic stress disorder (1,236).
It wasn't until 1980 that the American Psychiatric Association officially added "multiple personality disorder" to the Diagnostic and Statistical Manual of Mental Disorders (DSM), the definitive handbook on mental illnesses. In 1994, the DSM changed the name of the disease to "dissociative identity disorder" and defined the condition as the presence of two or more distinct personality parts or states.
The new name was aimed at presenting the condition as the fragmentation of identity — a failure to integrate different parts of self, explained Spiegel from Stanford, who chaired the group that recommended the change to DID. That fragmentation is fundamentally a problem of memory, he said, meaning some parts of the self don't remember other parts' experiences, which can result in temporary amnesia. Some parts may be protecting the "host" — the main alter — from painful memories of abuse.
Despite the disorder's recognition in the DSM, as well as research demonstrating the distinct brain activity of people with it, DID and the role of trauma in causing it remains controversial among mental health professionals — much to the frustration of those who have studied it extensively and to those living with DID. Some researchers still debate the legitimacy of DID diagnoses and continue to question whether the past trauma that DID patients cite actually happened at all.