It wasn’t until after Karin’s fourth suicide attempt that the mental illness she’d battled her whole life finally began to make sense.
Seated in a hospital conference room with a psychiatrist, the doctor asked her if she understood bipolar disorder, which she knew she had. She told him yes and that she understood why she took meds for it. Then he asked if she realized there was a name for the other symptoms she was experiencing. She told him no, that she thought it was all part of being bipolar. He explained to her that her memory lapses and the loss of time could be accounted for by another very complex disorder called Dissociative Identity Disorder and that she would need to work with her outpatient therapist to deal more deeply with it.
When Karin left the room, she felt relieved that there was a name for what she was experiencing but also scared to death. Not until many years later, after much therapy, did she begin to realize that she did have multiple personalities living inside of her and that it could be traced back to the abuse she endured as a child.
To this day, she’s still trying to map out who she is.
“I could take drive four hours from Virginia to Maryland and have no memory how I got from point A to point B,” she says.
But once the doctor asked about her symptoms, focusing on memory lapses and loss of time, she began to understand the mysterious gaps in her history.
“I was a kid who always daydreamed a lot and never really thought about the time I missed,” she says, now forty-one and in therapy to treat DID. “When he told me I was surprised and a little angry at myself for not putting the pieces of the puzzle together myself. I spent the next couple of days asking a lot of questions and trying to figure out how I was going to deal with this revelation.”
According to Sidran Institute, an organization dedicated to educating and helping people survive trauma, DID may affect one percent of the American population. That’s one in one hundred people, putting DID in the same category as schizophrenia, depression, and anxiety as one of the four major mental health problems today.
According to J.B. Foote, M.D., a psychiatrist diagnosing DID for fifteen years, patients who suffer from DID have endured an average of seven years of psychiatric treatment, including multiple psychiatric hospitalizations, before being correctly diagnosed. And when they are given a diagnosis whether it’s bipolar disorder, borderline personality disorder, schizophrenia or depression, or combinations, it’s wrong. Many people with DID suffer added dangers of being prescribed wrong meds and enduring medical environments not conducive to health.
“I’d been hospitalized many times before,” says Karin. “The hospitals I had been to always told me I was just manic and having psychotic symptoms. I didn’t know any better so I just took the meds they gave me and once I felt safe again they released me.”
“There’s a widespread lack of education about this, combined with controversy and skepticism,” says Dr. Foote.
The numbers may be even higher as DID may affect five to twenty percent of people in psychiatric hospitals, many who have received other diagnoses. The incidence rates are even higher among sexual-abuse survivors, the majority women, and among individuals with chemical dependencies.
“Many people who have DID may function extremely well as mothers and wives, and even in high-level professions – so well so that no one around them may suspect their problem,” says Dr. Foote.
“It’s weird,” says Karin. “But to people who don’t know me, I look like a person who really has it together. I have worked hard over the years to hide my DID because I knew that few people understood it and I did not want to be ostracized.”
Veronica D. Abney, Ph.D., a licensed clinical social worker in the field for twenty-five years, agrees with Foote that DID is an illness not fully recognized.
DID is a disorder that develops in childhood between the ages of five and seven. Most people when they think of DID, known as multiple personality disorder until 1994 when the American Psychiatric Association’s manual changed the name to dissociative identity disorder, are reminded of the terrifying 1970’s novel Sybil that depicts the illness. The disorder begins with a horrific childhood history not diagnosed until adulthood. To develop DID, a person must have suffered severe, horrific child abuse whether physical, sexual, or emotional.
“DID develops in childhood” says Dr. Abney, “because a child doesn’t have a caretaker to soothe them. Kids have a limited repertoire of defense mechanisms. They “make believe” they’re different people.”
These “make believe” people become what is known as alters, insiders, or parts.
An adult coping and going through life carrying these experiences, these painful memories, may suddenly find “something” triggers the abuse. For example, a mother may first experience DID when she has a child the same age she was when she suffered such horrendous abuse.
Dissociative Disorder is the larger umbrella diagnosis that includes the full spectrum of dissociative illness. Complex and wide-ranging, the disorder itself can be gauged using the Dissociative Experiences Scale, a screening test made up of twenty-eight questions. DID is just one of many dissociative disorders ranging from depersonalization to post-traumatic stress disorder. But DID patients who have suffered horrific childhood abuse consistently score high on the test, and most are diagnosed with post-traumatic stress disorder as well.
Understanding the finer lines of the disorder in our culture can be tricky. Pop-star Beyonce is famous for her “alter ego,” Sasha Fierce, whom Beyonce claims is more fashionable, daring, crazy and impulsive than the “real” Beyonce, and so is Christina Aguilera’s, Xtina, who lets her push sexual boundaries on stage. Tila Tequila has claimed she has DID and her alter, Jane Cordovez, filmed herself on Ustream webcam with a shotgun in her mouth. And the new Emmy Award winning Showtime series about to go into its second season “The United States of Tara,” deals respectfully with Tara, a mother suffering from DID and trying to raise a family.
All human beings experience some level of dissociation whether losing themselves in a good novel, film or daydreaming on the train. Everyone scores somewhere on the DES test. Everybody has parts and parts of themselves they don’t like, but being accountable for personal behavior is what matters.
So where do Beyonce and Christina fall on the dissociative scale?
“It’s a coping device, dealing with stress,” says Abney. “They are conscious of what they’re doing. Everyone dissociates to a certain degree. We all have moments of dissociation. The criteria for DID diagnosis is amnesia or ‘Is it Live or is it Memorex?’”
For DID patients, the question is, is reality filled with awareness and consciousness or is it altered?
It’s possible for DID to be cured through psychotherapy with the long-term goal to integrate the alters and parts. But the treatment experience can be extremely painful, as the patient must remember and accept traumatic memories. Healing can take many, many years. But it’s possible for the alters or parts to merge into a single whole personality and reclaim the awareness, identity, and history previously held by the individual parts according to Sidran.
“Most people think of Sybil when they think of DID,” Karin says. “But people who have DID can have normal lives and function very well.”
For more information, visit The International Society for the Study of Trauma and Dissociation.