If any of our PatientNextDoor readers have seen the movies Sybil or Split, you may think you understand what dissociative identity disorder (DID) is about.
If so, you would be wrong.
Neither could you understand what was once called multiple personality disorderis like by watching television programs like The United States of Tara.
Hi, it’s Shirley of the PatientNextDoor support team and I was diagnosed in 1990 with dissociative identity disorder.
In this article, I am going to try and give you a better understanding of not only what dissociative identity disorder is, but also what it is like to live life with the condition.
Robert Frost and DID
In 1916, poet Robert Frost wrote a piece he titled “The Road Not Taken” in which he describes his traveling down a forest path and trying to decide which way to go upon encountering a fork.
To be honest, Mr. Frost never intended for his poem to be anything but a whimsical description of walking in the woods. However, people like myself have found deeper meaning in his words.
Dr. M. Scott Peck, psychiatrist, and author wrote a book in 1978 that gave fresh meaning to the poem written by Robert Frost.
Dr. Peck’s book talks about confronting and solving problems and how painful that can be. Human beings, he tells us, will take the path of least resistance if they can to avoid the hardships that come from changing their lives.
Dr. Peck also discusses how to become one’s own person by suffering through the hell of honest self-examination to find one’s life anew.
This path of most resistance he titled, the road less traveled.
Achieving healing from severe childhood abuse and especially dissociative identity disorder takes years of arduous work and self-examination. Working with a dedicated therapist, it is such a difficult path that many who begin the long walk to health choose instead to quit or will die in their attempt to find peace.
That is the significance in this article.
I am going to tell you about not only the facts as they are known about DID but also about my travels down the road less taken.
Defining Dissociative Identity Disorder
The newest guide used in psychiatry to diagnose mental disorders in the DSM-5, released by the American Psychiatric Association (APA) in 2013.
The DSM-5 gives the following diagnostic criteria for Dissociative Identity Disorder:
- Disruption of identity characterized by two or more distinct personality states, which may be described in some cultures as an experience of possession. The disruption of marked discontinuity in sense of self and sense of agency, accompanied by related alterations in affect, behavior, consciousness, memory, perception, cognition, and/or sensory-motor functioning. These signs and symptoms may be observed by others or reported by the individual.
- Recurrent gaps in the recall of everyday events, important personal information, and/or traumatic events that are inconsistent with ordinary forgetting.
- The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
- The disturbance is not a normal part of a broadly accepted cultural or religious practice. Note: In children, the symptoms are not better explained by imaginary playmates or other fantasy play.
- The symptoms are not attributable to the physiological effects of a substance (e.g., blackouts or chaotic behavior during alcohol intoxication) or another medical condition (e.g., complex partial seizures).
Yes, I know. It is a very clinical definition.
What it means is that my world is experienced differently than yours. No, I am not a person with more than one personality. Rather, I am an ordinary human being with one personality that did not knit (associate) together when it should have.
The reason it didn’t is that at the time when I should have been meeting the critical milestone of becoming a cohesive “I,” I was too busy trying to survive emotionally and mentally severe and repeated child abuse.
Dissociative identity disorder is not a “FREAK” disorder that happens because someone wishes to have it, it is a developmental disability that has made my life a chaotic mess.
Even thirty years after beginning treatment, I still and will always have alternate ego states that make life difficult.
The Most Obvious Question; What are the Alternate Ego States?
The symptom that the public thinks of when they hear the term dissociative identity disorder or multiple personality disorder is the existence of the alters. Many do not examine the research and evidence about alters but instead choose to believe what they see on TV or at the movies.
A person living with the diagnosis of DID can have from two to hundreds of personality states. However, these alters are not separate people, they are extensions of the same person.
I’ll explain that closer in a bit.
The first thing I want to tell you is that you have alternate states too. Each time you do an activity, you are drawing on the experiences you had before in a similar situation.
For instance, you act differently at work than you do having a romantic night out with your partner. Those are two distinct ego states that you use to understand how to behave in either situation.
Surprised? Many people are when I tell them about their own alters.
The fundamental difference between your alters and mine is that yours were successful in associating in early childhood and where mine were not.
My alters are no more different people than are yours. I am one person who happens to have over 100 ego states that are not associated, thus the term dissociated.
It isn’t hard to see how chaotic life with dissociated ego states can be. Because of amnesiac barriers put up to keep the core self from knowing about the horrendous abuse the child is going through, the alters in a person with DID may not know about each other.
Knowledge of the existence of alters might not happen at all except during the period when the human brain reaches maturity seems to clear the way.
During this time, the brain is pruning away synapses (connections between brain cells) that it isn’t using. This happens all through a human’s lifetime, but during brain maturity, new connections are made to strengthen the ones that are the most used.
So, in my case, at the age of 30, my brain was able to make connections that hadn’t been formed before, and I began to have memories that spontaneously returned.
For the record, I was not in therapy yet, so the idea that my memories were implanted by a careless therapist doesn’t hold water.
I suddenly and inalterably became aware of what had happened to me in my childhood and the presence of the alternate ego states that had kept me sane and alive.
Another important thing to understand is that dissociative identity disorder isn’t only found in the United States.
It is a human disorder and can be found all over the world. In fact, it is believed that 2-4% of the global population have dissociative identity disorder.
What Causes DID?
Explaining the causes of DID would take a book, in fact, I am currently writing my fourth book about it, and it is taking an enormously long time to compile it.
However, I’m going to briefly touch on what is currently known about this enigmatic disorder.
It is well-established that DID forms in very early childhood, usually before the age of 5 or 6. The root cause of DID stems from extreme child abuse and/or neglect. A young child’s mind is not capable of coping with the abuse perpetrated against their bodies.
A Brief Explanation of Dissociation
Everyone dissociates. I’ll give you an example. You go to the movies to see a film you have been looking forward to for months.
You get your popcorn and soda then find your seat and full of anticipation settle in. You feel happy because no people are sitting on either side of you.
The movie begins, and you get wrapped up in the drama unfolding on the screen by your favorite actors.
Before you know it, the film is over, and you suddenly become aware that not only have you not touched your soda or popcorn, but people are sitting on either side of you applauding the film.
You were so involved in the film that you dissociated and focused only on the movie. Everything else in the room became non-existent.
Dissociation is believed to be an evolutionary adaptation designed to help humans survive in a hostile environment. When we were evolving, there was a distinct evolutionary edge if our ancestors could freeze and try to make themselves both emotionally and physically invisible.
Usually, once the danger was perceived, they would flee or fight. However, in the case where there was no escape, and they were helpless to protect themselves, they had no choice but to dissociate not to be detected.
People like myself who live with dissociative identity disorder have taken this normal defense mechanism that all humans have and maximized it for survival. Children cannot either escape or hide from an adult who wants to harm them so naturally, they use the only defense they have. They dissociate.
There are many theories as to what causes dissociative disorder and the formation of separate alter ego states, but as I said, it would take a book to explain all of them. One thing is for sure, DID is caused by extreme and repeated crimes that are perpetrated against very young children.
The Brain Structure Changes Found with Dissociative Identity Disorder
The fear response is one of our most basic human traits and involves the most primitive structures in our brain. If we detect a threat, it is our amygdala that responds first. This almond-shaped region in our brain regulates how we see our world.
If all is well, it has other duties to perform, but if it perceives danger, it goes into action. The two primary structures responsible for the fear response are the amygdala and the hippocampus.
The amygdala releases stress hormones that enter what is known as the sympathetic nervous system to be distributed to other parts of the brain to ready our bodies for the fight/fright/ or freeze response.
These hormones trigger a cascade of hyper-alertness with our pupils dilating, our breathing increasing and a spike in glucose to the muscles to ready them to run. Organs not deemed necessary are shut down such as the stomach or intestines.
A region known as the hippocampus works very closely with the amygdala. Its function is to interpret what the amygdala has deemed a threat to help the person know if the threat is real.
Typically, the hippocampus will dampen the fear response set off by the amygdala when it sees the danger is either not real as our “thinking” part of the brain is finally aware that danger has been detected and can perceive the fear response is not necessary.
After the fear response has passed, the stress hormones that were flooding the human’s body will subside and return to baseline.
However, if a young child is being repeatedly experiencing the fear response from their amygdala and hippocampus, these hormones have no chance to return to baseline.
Instead, the hormones are continually keeping the child in “red alert” status. This state of constant flooding of the child’s brain with the hormones causes damage to the child’s developing brain.
Beginning in the 1990s and continuing to this day, researchers had at their disposal new diagnostic techniques such as magnetic resonance imaging (MRI) that allowed them to see the brain like never before.
The first psychiatric patients to benefit from this brain imaging breakthrough were veterans who had returned home after serving in the military.
The researchers began to use MRI imagery to investigate these men and women to try and understand post-traumatic stress disorder. What they found amazed everyone. The amygdalae and hippocampi of these young people had shrunk.
When the specialists thought about why this would be so, they realized that the stress hormones that were secreted because of terror had changed their brain structures.
If wasn’t long before they began placing people diagnosed with dissociative identity disorder in these fantastic machines as well. What the researchers found is astonishing.
In a study published in the journal Am J Psychiatry, some of this research using MRI technology reported that patients diagnosed with DID had hippocampal volumes reading 19.2% and amygdalar volumes 31.6% smaller when compared to healthy subjects.
As we have already established, the amygdala is responsible for the fear response. If it is continuously being activated without returning to baseline, it is easy to see how it could be damaged in the pliable brain of a young child. Under these circumstances, this vital brain region does not develop correctly.
The abused and/or neglected child lives in “red alert” status all the time and reacts fearfully to objects or people who are not a threat. This fear response may or may not be visible.
However, blood tests were done on children known to have been victims of abuse or neglect paint the story. The results show a spike in these hormones in their bloodstreams.
Damage to the hippocampus not only changes the brain’s interpretation of the perceived danger but also changes the way the traumatic event is consolidated into long-term memory.
The hippocampus’ job is to interpret an event by encoding it and storing it in such as matter that the person can recall it later.
For instance, a memory of petting several kittens would be “filed” together with similar experiences so that later in life holding one kitten will trigger the past memory of playing with several.
If this mechanism is impaired by the hippocampus being underdeveloped, storage errors will occur, and the memory of abuse may be put in a harder to access place. The result of this “misfiling” of memory means the person is unaware they have this memory until it is suddenly triggered by something with the five senses, sight, smell, taste, touch or sound.
In this case, the person would experience a flashback.
What is it Like to Live with Dissociative Identity Disorder
I have had people ask me how they could form DID because they thought having superhuman powers would be fantastic.
Let me state here that I DO NOT have superpowers and living with DID is not something one should desire. The chaos and emotional turmoil of living in a dissociated system are overwhelming at times.
I have been hospitalized over thirty times, once for more than seven years, not because I’m a nut or dangerous, but because living as a person with dissociative identity disorder is exhausting.
I have times when I get triggered and lose hours or days, coming to myself not knowing what I have said or done while gone. That’s because I wasn’t truly gone, one part of myself had taken over to handle the perceived dangerous situation.
A majority of the time the danger isn’t real but remember my underdeveloped amygdala can’t tell the difference and my hippocampus cannot stop the flow of stress hormones.
When an alter takes over strange things happen. I have found money, had money disappear, had people accuse me of saying harmful things to them and broken the law at least once.
None of my alters have ever been violent, another myth that is perpetrated against people who have been given the diagnosis of DID. In fact, like all people who are living with a mental health issue, we are far more likely to become victims to than to hurt others.
I could go on and on debunking popular myths, but this article has already gone long. Perhaps we can revisit this subject again in a later article or series of articles.
Bottom line, dissociative identity disorder is not a pleasant and joyfully fun disorder to live with. It is exhausting, debilitating, and at times scary.
There is hope. Psychotherapy is the only cure that they have found will help people like myself who have dissociative identity disorder. There are many forms of psychotherapy, but I have found my way to living where I am, in relative peace, by taking the road less taken in therapy.
If you or a loved one have been told they have dissociative identity disorder, do not panic. You can find a therapist to help you by doing some legwork or seeking help online. The International Society for the Study of Trauma and Dissociation (ISST-D) has a wonderful website with further information about dissociative disorders, including DID. They also have a “find a therapist” page.
In the meantime, please do not hesitate to ask questions and leave comments below. I will get back to you quickly and answer as best I can.
Discovering you have dissociative identity disorder may feel scary at first, but once you realize how this coping defensive mechanism saved you the fear will leave.
We are human first, multiples second. Please, remember that, all of you.
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There is a condition group for dissociative identity disorder, and I am always watching out for questions there.
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Disclaimer: The opinions expressed in this post are the personal views of the author. They do not necessarily reflect the views of PatientNextDoor. Any omissions or errors are the author’s and PatientNextDoor does not assume any liability or responsibility for them.