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Why It's Important to Understand Dissociative Identity Disorder

Patricia is 4 years old. She covers her face under the scoop-neck of her blue flannel nightgown. She hides in terror under the covers in her white canopy bed. Now decades later she loses time and sometimes awakens in the fetal position in her closet. Patricia feels weak, small, powerless.

Kat was sexually abused at 10 years of age by a teacher she adored. But in her gut she was confused so she ambivalently decided to tell someone, only to be re-victimized by the priest she entrusted her secrets to. It took decades for Kat to realize she had been sexually abused; naïvely believing that her love for this middle-age man somehow constituted her consent! She is a pathetic excuse of a woman, filled with shame and self-loathing. She is an enabler. She is a rescuer. She is codependent on the love of abusers for her validation.

Stephanie is 16 years old, an old soul with the spirit of eternal youth. She practices dance routines with her nieces on Sunday afternoons after church. But by Monday she is plagued by panic attacks so severe she stopped attending school. Her boyfriend professes his love for her with flowers and gifts and pet names such as baby and bitch and c*nt. He’s left bruises on her arms and burned her inner thighs with the heater of his cigarette. When he finds her hiding in the laundry basket he leaves her with a busted lip and a black eye. She tells her sister he would never hurt her. He loves her. She fell.

Tina is 19 years old. She was sexually assaulted one night after taking a ride home from a trusted friend. She was drunk. She blames herself. Others blame her too. Decades later Tina has a severe phobia of driving and she has never been drunk or trusted a man since. She is the guardian and protector of secrets.

Rachel is 30 years old. She is what one may call a “strong woman.” She spent the last 10 years advocating for women, children, the broken and the marginalized. She is hypervigilant and always in control of her surroundings. She’s taken self-defense and kickboxing and practices them daily in the mirror. One night, while out with the girls, a man appears outside her washroom stall. She’s frozen and cannot move or speak. He rapes her. Eighteen years of therapy and she still cannot see his face. She’s filled with rage… towards herself.

Christina is 48 years old. She is a former psych nurse and current mental heath advocate. She is a divorced single mom of four incredible children. She lives with severe depression and anxiety. At 20 years of age she packed away the traumas of her youth in a box marked “fragile do not open.” And for 20 years it stayed packed away in the deep recesses of her mind. Until one day it opened, seemingly unexpectedly.

I am Christina and I have dissociative identity disorder (DID). I am also Patricia, Kat, Stephanie, Rachel and Tina. I have my own memories and lack there of. I also have theirs. And although I hold these memories, I do so from a distance, like watching them unfold from afar as if they happened to someone else. I always had the memories. But the “others” hold the overwhelming emotions attached to the traumas. And my body, well my body has told my story all these years without us ever needing to utter a word. The body. It remembers everything.

When I was first diagnosed with DID and secondary complex PTSD, I was in complete denial. I now understand it to be a defense mechanism for a child in danger. Accepting the diagnosis was the only way to actually make sense of the senseless acts perpetrated against me.

Here are a few things people need to know about DID:

What is dissociation?

I like to think of dissociation as a spectrum disorder. At one end of the spectrum is daydreaming. At the other, complete amnesia. Many fall somewhere in the middle. Nonetheless, we all dissociate on some level. If you’ve ever driven home from work, but can’t recall the details of how you got there because your mind was elsewhere, you dissociated. If you’ve ever had a conversation with someone where you nod and agreed, but your mind was thinking about what groceries you need for the week, you dissociated.

Now let’s take this up another notch. A loved one unexpectedly dies. One moment you are down on your knees crying. You are filled with grief so devastating you don’t know how you will get through it. But you do. Your brain takes your grief and unconsciously compartmentalizes it so you can deal with the necessary tasks at hand like planning the funeral, accommodating guests and comforting your family. If you’ve experienced this, you dissociated.

You were assaulted or perhaps in a car accident. You have no head injury but have trouble remembering the event. Your memory is foggy. You may be injured and yet have no pain. If feels as though you’ve watched it happen, but it doesn’t feel like it actually happened to you. That is dissociation. Now imagine you are a child being sexually abused and your perpetrator has told you you can tell no one. You feel as though you have no one to turn to so you turn inward. That young child creates “others” in their mind to endure the trauma, to survive, to live in the world.

What are altars/emotional parts (EPs)?

Alter is a term to describe alternate ego states or personalities, used in relation to a diagnosis of multiple personality disorder (a controversial diagnosis that no longer exists in the DSM because of false memory syndrome and the approach by which these memories were retrieved). It was replaced with the term dissociative identity disorder. In DID, these states are referred to as identities or emotional parts (EPs). “Parts” is the word I feel we can all relate to, because truth be told we all have different identities. The person you are at work is not the same person you are when you were at home with your family. And we all can relate to experiencing a sense of inner conflict within ourselves. For example, “A part of me thanks I should leave. But another part of me feels as though maybe I should stay.” When we see things from this perspective it becomes much more relatable. Switching between parts is seamless, so much so that it is missed by not only the mental health profession but even by the person struggling, so be leery of anything you find on YouTube that states “switches caught on camera.” Misconceptions/exaggerations are dangerous and delay diagnosis. Which brings me to my next point.

Why is there so much stigma around DID?

Let me start by saying movies and TV series have done a great disservice to people living with this condition. I have never witnessed clinical depression portrayed as criminal, possessed or evil. But from movies like “Split,” to one of my favorite series, “Bates Motel,” DID is both named and blamed for insanity and even murder when there is zero evidence of any link between psychopathy and dissociative disorders. DID is the hand-picked mental health disorder used to portray crazy. But here are the facts:

DID is nothing to laugh about it. Almost all DID occurs as an advanced coping response to the physical, emotional and/or sexual abuse of innocent children. A trauma so severe and disruptive to one’s forming psyche, that in order to survive it, a childmind creates other identities to hold the depth of their pain, fear and despair.

How common is sexual abuse/sexual assault?

According to the Rape, Abuse & Incest National Network, one in nine girls and one in 53 boys under the age of 18 experience sexual abuse or assault at the hands of an adult. Additionally, 93% of child sexual abuse victims know or have some form of a relationship with their abuser, and those who live through sexual abuse are about four times more likely to experience PTSD as adults. The ACEs Study of adverse childhood experience ranks childhood trauma as an epidemic that poises a great threat to mental and physical health; survivors of childhood trauma have a markedly increased risk of autoimmune disease, chronic illness, degenerative disease and cancer, and a 20 year shorter life expectancy than those with ACEs score of zero! It’s the evidence that is frightening, not the condition!

What are the facts about DID?

The prevalence of DID is considered to be rare. About 2% of the population has a dissociative disorder. But given the stigma, even in the mental health community, it is probably much more common because of its high correlation with PTSD. Many have yet to be diagnosed. Others have been misdiagnosed with borderline personality disorder, bipolar or even just moody, forgetful or even malingering. One need not look any further than the internet to find debates, even in psychiatry, about its validity. Perhaps it’s been easier for us as a society to blame victims and accuse them of making up stories than it is to comprehend the magnitude and number of perpetrators of these heinous crimes. And that is a dangerous method, given that 70% of people with DID will attempt suicide.

My doctor regularly reminds me that there are people in the world who still believe the earth is flat and that believing it does not make it so. Dissociative disorders are a DSM diagnosis, as real as any other properly diagnosed medical condition. And for those who want tangible evidence, the science is validating. Functional MRI’s of the brain reveal a functional disconnect between the amygdala (the fear response center, responsible for fight, flight, freeze) and the engagement of the prefrontal cortex, necessary for advanced cognition.

According to Dr. Blair West, EEGs of the brain have shown distinct difference in the brain waves between identities. Most recently, Jeni Haynes, a scholar from Australia, used her mind and diagnosis of DID as evidence (no different than that of any other crime scene) of years of severe, unimaginable sexual abuse. Jeni made history recently by testifying in Criminal Court against her father as her alternate identities. Specifically, the court heard from Symphony, Muscles and Little Ricky, a few of her 2500 personas. He is awaiting sentence. Despite her brilliance and 18 years of university education, she lives in poverty on a disability pension because of her abuser’s depravity. It is only by the grace of Haynes’ “60 Minutes” Australia interview that I found the courage to write this today. Until now, only two other people know of my dissociative disorder, besides the physician who made the diagnosis.

Why is it so important to understand DID?

The answer is simple. It one of the only mental health disorders where we know the exact cause and effect. It is the one condition that holds the potential to be prevented and even eradicated. How? By facing the deep discomfort of acknowledging the prevalence of childhood trauma; specifically sexual abuse. It means changing the entire “village” of people who raise our children. It means our doctors, specifically pediatricians, using ACEs as a screening tool for childhood trauma. It means educating our teachers and every parent about spotting the signs of abuse in our children. It means dispelling rape myths and a complete overhaul of our justice system, from investigating officers to the highest judges in our nation. It means changing our language and terminology of sex crimes to reflect what they are truly about, which is not sex but rather predatory, deviant perpetrators using coercion, control and exploitation as well as power to abuse children. It means unlearning and relearning everything we think we know about our children and how to protect them. It means admitting we have failed to do so and DID is our proof.

This piece originally appeared on The Elephant Journal.

Getty image via SIphotography