Initially, I had no words. Now, a week later, I need to write. I need to get my thoughts out. I was triggered. I am going to relive one of the most horrific times of my life for the first time, because I am passionate about the importance of searching for the right diagnosis when you know something is wrong.
Last week, I watched an interview with AnnaLynne McCord, a 33-year old actress who was sharing her very personal story about being diagnosed with dissociative identify disorder (DID) from childhood trauma.
I had no words at the time. I watched the interview – numb. But I knew it triggered my emotions and my passion for making things right. It was the first time I’d ever heard anyone speak publicly about this disorder. The disorder that turned my life upside down several years ago.
DID used to be called multiple personalities. I’m sure you’ve seen movies and television shows with characters who have multiple personalities. The various personalities are typically called ‘alters’ and you usually witness obvious, melodramatic scenes when the character on your screen switches between alternate personalities.
Most recently, I remember episodes of Criminal Minds that dealt with characters who had multiple personalities. The characters were what you would probably consider exaggerated forms of personality disorders that you believe only exist on television.
As far back as 1976, I have similar recollections of the movie Sybil with Sally Field. Back then, I had the same thoughts. Characters like this only exist in movies and television, right? Wrong. What I have learned is that multiple personalities, now known as DID, does in fact exist.
Can this really be happening?
What I’ve also learned is that you often must fight for the right diagnosis so you can get the right treatment.
Research suggests 90–95% of people who are diagnosed with this disorder demonstrate more subtle alter switches and become adept at covering-up their disorder, especially as they get older.
AnnaLynne McCord shared that she had been able to do this throughout her adult life. But it took her years to get an accurate diagnosis for what was happening to her. Now she is speaking out about her experience. She identified three personalities. One was a dark, protective personality that came out when she was frightened. This was the personality that developed because of childhood abuse. Two others were simpler and safer. As she talked, it took me back to my experience with DID.
For better or worse, an 8-year old child, who had come to be in my care, did not have the ability to know what was happening to her when she developed DID. Or why it was happening. Nor did she know how to cover-up the switches like adults usually do. Thus, the first time it happened with this child, it was an explosive episode of unexplained violence and aggression that looked like what you have seen on your television screen, but it was totally out of character for the child.
She was punching holes in walls with her tiny fists, kicking furniture with her feet, fighting anyone who tried to comfort her. All of this was completely out of the blue with no warning of a problem. Like flipping a light switch.
During the incident, she got in a crouching position like a tiger ready to finish off its prey and she started growling at me. She had no idea who I was. She just knew she wasn’t letting me or anyone else near her. All I could do was keep her safe from glass, corners of furniture, other dangerous items in her reach. Then, I observed that she was scratching and biting her arms and causing them to bleed. I tried to restrain her.
Since I was a special educator certified in non-violent de-escalation techniques and restraint, I thought I could keep her safe. Nope. I was wrong. She was fighting demons of some kind. She was stronger than any man, woman, or child I had ever encountered in my life. I thought the child was dying. I thought a brain tumour must be significantly altering her brain and she would be dead soon. I was in a total state of panic and shock.
Sweat was accumulating everywhere and my mind was racing. I was confident I could “fix” this while also being scared to death for both of us. I called 911 for help and she was eventually taken to Children’s Hospital. By the time we arrived, she was herself and did not remember anything about the incident. I was covered in scratches with torn clothes and an emotional mess. She was her usual, sweet self. Tired but fine. Thank God.
None of the medical staff knew what to do or what to call what I had witnessed for close to 90-minutes. A brain tumour was ruled out. But I knew something was wrong. Something was seriously wrong. Out of pure speculation, the doctors called it psychogenic non-epileptic seizures.
This was the beginning of many incorrect diagnoses. Just like AnnaLynne McCord shared during her interview. So many wrong diagnoses because neurologists and psychiatrists and others in the medical field are not trained to diagnose DID properly.
How many wrong diagnoses can we get?
Wrong diagnoses meant wrong treatment plans. Wrong treatment plans meant no resolution. It was a vicious cycle of emotional trauma for years. Twenty-three episodes occurred in the next twenty-three days. Yep. You read that right. There were 23 switches to a dangerously violent and aggressive personality in the next 23 days. But no one knew these were switches, or alters, or anything related to DID at this point. As AnnaLynne McCord described, she didn’t know what was happening to her either.
The police and EMS needed to be called almost every time an incident occurred. Witnesses were injured trying to help the child. In fact, at times witnesses were taken to the Emergency Room for treatment of their own injuries from the chaos and physical attacks.
Each time, she would pass out near the end of the episode. Sometimes she would pass out and her feet and hands would start trembling right before she woke up again, still as the violent alter. When she came to, if she had returned to herself, she had no recollection of the events that had occurred.
Before long, she was hospitalised in an in-patience child psychiatric unit. She had neurological and psychological studies. She was given medication, counseling, and behavior modification supports. In-home counseling was arranged for 1–3 times per week when she was released. Still, no one had a clear diagnosis.
Episodes continued to occur regularly for months. Not as often as every day, but several times a week. During the episodes, furniture was overturned and thrown across the room. Whole watermelons were picked up and smashed on the kitchen floor. Mattresses were removed from beds and propped up against bedroom doors to keep anyone from coming in and hurting her.
Yes, all this was coming from a young child. She looked right at people she’d known and loved all her life but saw someone different. Scared to death, she would become violent and aggressive like a wild animal. When the switches occurred in public, police needed to be called for help immediately due to the danger of moving cars.
Sadly, it was not unusual for the police to have to handcuff the child to keep her and others safe until she switched back to herself. I learned to live on the edge, never knowing what might cause these episodes, as I had started calling them. She didn’t remember them. Since they could happen any time of day or night, others weren’t always around to witness what was happening. I was scared for her. I was scared for me. I was scared for anyone nearby. And I was frustrated because doctors were unable to identify what was going on with her. I never slept until I was too exhausted not to sleep. I was afraid to close my eyes. I spent more time crying than any other time in my life.
Once the doctors ruled out a brain tumor and other neurological disorders, they started exploring psychiatric disorders. They talked about everything from anxiety to depression to psychosis. And every time the doctors would think of something, someone else would rule it out because it didn’t meet all the criteria.
For years, I had taught emotionally disturbed students, but I couldn’t figure out how to care for this child. Frustrated, scared, and confused, I kept taking her to doctor after doctor, specialist after specialist, and counsellor after counsellor. Fortunately, with each violent episode, she revealed more and more.
The cold hard truth about what was happening
It turned out she was acting out toward a childhood abuser I knew nothing about. Consciously, she knew nothing about the abuse either. She no longer had contact with the abuser, but little by little, when she was in an altered state, she was revealing horrific details of what had happened to her. Soon, another alter appeared. This one was a toddler. This one only wanted to be protected, loved, and surrounded by all the stuffed animals she could garner.
Then another alter appeared. This one was older and wanted to be a carefree, happy-go-lucky child with no worries in the world. Giddy and silly. Soon, it became clear that only one of her alters knew anything about the abuse.
Almost a year after the first alter appeared, and too many diagnoses to even list, a proper diagnosis was made by nationally recognised expert, Dr Joyanna Silberg, in the area of DID. Finally, there was an answer that made sense and appropriate treatment could begin with appropriate specialists. But the process of healing was just beginning.
As AnnaLynne McCord shared in her interview, any little thing can be a trigger. A tone of voice, a smell, a colour, a sound, a memory, a piece of furniture. It’s a very long process of changing the way the brain reacts to even the tiniest trigger following trauma. When triggered, adults can usually switch with subtleness that is not detected by others, but children are often unable to do that. Eventually, as the child would switch alters during counseling or medical appointments, and reveal information about her abuser, the professionals were required to report it to various Departments of Child Protective Services where her alters reported the abuse occurred.
Child Protective Services conducted investigations. Forensic investigations were done by the police, but in her altered state, she couldn’t provide enough information to warrant criminal charges. And there was only one alter that could report the details of what had happened to her.
She was left to deal with the results of the abuse through extensive counseling and numerous more in-patient hospitalizations at three different child psychiatric hospitals over the next two years.
I was left to struggle with the fact that two social systems had failed an innocent child. There were no words to express my rage. Child protective services and the criminal justice system had not done their job. Our social service and justice system had let down another child. But that’s another story for another time.
Counsellors and psychiatrists were outraged. Once they knew what they were treating, it all made sense. The child was able to provide enough details for them to work through the abuse with her through years of counselling, but her childhood was stolen from her. And she will live with what happened to her forever.
Today, all is fine with this child. But there are so many unanswered questions about DID. No one knows for sure whether she may or may not experience further episodes later in life; only time will tell.
I am thankful for AnnaLynne McCord’s honesty in dealing with her diagnosis and bringing about awareness to DID. I genuinely hope her openness will help others know what to look for and how to find help. Ideally, this will open a discussion and demystify the disorder. People need to understand that DID is a strong desire to survive trauma.
If you are experiencing similar symptoms, or know someone who is, please locate a specialist and get help. Keep looking until you are satisfied with the answers and treatments. Don’t settle for less. You deserve nothing but the truth and the appropriate help you need to get well.
Susan Ballinger is a retired educator who founded Sassy Sister Stuff, a website for awesome women who are actively seeking to redefine their personal growth, at any age or stage of life.