More than PTSD: The Mental Health Collapse That Led to My Diagnosis of Dissociative Identity Disorder

In my last blog post, I shared that I was diagnosed with Dissociative Identity Disorder and explained why I made the decision to go public about it. It was shocking and unbelievable to me that I could live with multiple identities for nearly 30 years of my life and have no idea about it. Over the last few years, I learned that this is actually a common experience for many people with DID. Not only can this make it difficult for multiples 1 to accept their own diagnosis, but it can also cause others to question the validity of the disorder. I want to share with you my experience of what led up to my discovery that I had Dissociative Identity Disorder. 

DISCLAIMER: The following blog may be triggering to trauma survivors. There are mentions of abuse as well as a small amount of imagery used to help the reader understand our experience.

During the fall of 2017, I went to a conference in New Orleans. While I was there, I experienced multiple triggering experiences in a period of just a few days. First, I met a young woman who I found out had been trafficked by the same person who trafficked me. I was shocked and hit with feelings of dread. It felt as if I was suddenly in immediate danger and at any point my trafficker could come around the corner, grab my arm, threaten me and force me to turn a trick 2. Up until that point I had felt emotionally disconnected from much of my trauma. It felt as if it were someone else’s story and not my own. At the time, I did not know that it was because my mind had subconsciously compartmentalized my trauma. 

When a person with Dissociative Identity Disorder cannot handle a traumatic experience, they dissociate 3 from their mind and body and an alter that can handle the trauma fronts 4 If there is not an existing alter that can take on the new trauma, the mind creates walls to separate the trauma and protect existing alters by either creating a new alter or storing the memory as a single fragment 5. This allows the system 6 to persevere through compounded trauma and continue to function as best as possible. In the future, a memory that triggers that particular trauma can result in physical pain (body memory) or flashbacks that cause a switch to the alter who experienced the trauma. Switching can result in amnesia between parts.

At the time of the conference, I was not aware of my DID diagnosis or the fact that I had other identities. I didn’t know that Kate took on the sexual trauma from my teenage years. While I (K.D.) was the one attending the conference, the trigger of meeting someone who was trafficked by the same person as us caused us to switch from K.D. (age 27) to Kate (age 14). Kate’s experience being trafficked was fresh for her–while 13 years had actually passed, Kate was not aware of the passing of time because she retreated from consciousness when she could not deal with the pain of her experiences. When she was triggered to the surface, she panicked at the thought that this young woman might still be connected to her trafficker in some way. What if he finds out where I am? If I had chosen to testify against him maybe she wouldn’t have been trafficked. This is all my fault. 

What happened from that point on at the conference is still very blurry. I wasn’t aware that I kept switching back and forth from K.D. to Kate because she could not stop fearing our trafficker. I am able to explain what happened today by talking with others who had assisted me at the conference, combined with a lot of communication that has happened between myself and other alters in my system over the last couple of years. 

When I went to my hotel room I logged onto the internet on my laptop and began searching for any records I could find of him. I was not prepared for the wave of emotions that drowned me as soon as I came across his mugshot on the sex-offender registry. The next day I tried to maintain my composure. I was supposed to speak during a breakout session. I was told that I did a great job, but I was so dissociated that I didn’t remember speaking at all.

At some point before leaving the conference, I was asked to join a group of people who were meeting to discuss safe harbor laws, which are laws enacted to protect and assist children that are victims of sex and labor trafficking. Victims are often induced by their traffickers to engage in criminal activity by force, fraud and coercion. Traffickers usually attempt to build trust with their victims before perpetrating violence, which causes confusion to the children who have been taught to trust them. Once trust is built, they are taught to fear and obey their traffickers by witnessing and experiencing violence and threats of violence. 

I should have politely declined to join the discussion, but I did what I thought was expected of me–I agreed without asking questions. Unquestioning compliance was a learned behavior that had undoubtedly saved my life during the time that I was trafficked. While no one had pressured me to join the meeting, I was in a fragile mental health state and lacked any energy to acknowledge or exercise personal agency. To my own horror, one of the cases that was discussed involved a victim that had the same first name as me. With every mention of the name, I became increasingly triggered as advocates, prosecutors, and law enforcement professionals commented about the case. The defendant was trafficked as a minor and her pimp forced her to recruit other girls for him. A prosecutor and a psychologist debated whether or not she should be prosecuted for human trafficking. 

How do they know that’s my name? I never use that name! Don’t they understand that I didn’t have a choice? I was 14!  Don’t they know what he does to girls who don’t listen?! 

 I have only vague bits and pieces of memories of anything else that happened during the three days I spent at the conference because of the level of dissociation I experienced. What I do remember, however, is that I had become so frightened by trauma memories that I was no longer living in the present. It was as if I had been transported back to being a young child and was reliving some of the most horrific experiences I had survived. It got so bad that I couldn’t be around anyone without seeing them as a threat. Even if I knew the person, they seemed unfamiliar and frightening to me  

Thankfully, a friend of mine already knew my history and has experience working with human trafficking survivors through some of their trauma. She was able to help me ground 7 myself enough that I was eventually able to fall asleep until I was supposed to leave for my flight back home.

 My entire life was turned upside down on that trip to New Orleans and I couldn’t understand what was going on. For months I was in a near-constant state of hypervigilance and cognitive shut-down. I was emotionally flooded and experiencing sensory overload. 

I could hardly go 5 minutes without being triggered by something that jolted me into a state of panic. The exchange of money flashed me back to the image of a hairy arm, handing my uncle money in exchange for sex with me. The smell of bleach took me back to a time where I had to clean up my own blood. The raised voices of a heated argument, transporting me back to a clenched fist of rage, swinging at me. Sudden movements or someone accidentally bumping into me sent me into a full blown panic attack. My body couldn’t handle the constant adrenaline and I would mentally and/or physically shut down. I would vacillate between a fight-or-flight response to a freeze-or-fawn 8 response. For months it felt like I was going in and out of consciousness and I couldn’t understand what was happening. 

I knew that something was wrong with me and it didn’t feel like anything I had ever experienced before. I couldn’t sleep and was having panic attacks every day, sometimes multiple times a day. I started losing time–I would find myself “coming to” in the middle of conversations I had been engaging in without any awareness. I would even end up in places and not know how much time had passed or how I got there. I didn’t understand why I couldn’t remember anything. Why suddenly I would forget how old I was or forget the directions to my therapist’s office (that I had been seeing for over a year). I didn’t realize that I was experiencing dissociative amnesia 9.

As I tried to make sense of what was going on, I became aware of internal conversations going on inside of my head. The voices, though inaudible, were distinctly different in every way. It felt as if 5 different people were arguing and I couldn’t quiet them. I became extremely agitated with any kind of external stimuli–any sound at all made me feel like I was going crazy because it already felt as if I were listening to a group of people trying to talk over one another.

 I started to get terrible headaches (a common symptom that people with DID experience before a switch from one alter to another) and became unable to access my short term memory. I would embarrass myself by repeatedly asking the same questions, unable to remain present long enough to follow a conversation. At times it felt like my head was spinning. I would switch in and out between alternate states of consciousness. Sometimes it happened so quickly that it felt like I was having a seizure or losing time.

I couldn’t work any longer and my relationships suffered. I had no way to explain what was going on to anyone, including my boss at work, without having to share sensitive information about my mental health that I wasn’t comfortable telling most people. I started to get accused of avoiding responsibility, lying about my whereabouts, and rudely ignoring people. Without knowing what was going on, I tried to create answers to questions I was being asked by piecing together clues from the fragments of memory I had. 

How could I expect people to believe me when my answers didn’t tell the whole story? But how could I tell my story when I was missing reels to my own life film? There were gaps in my memory that would range anywhere from a few seconds to a few years. I couldn’t explain why sometimes I could remember fine details about my life and other times I couldn’t remember anything at all. That was when I decided that it was time to see a psychiatrist.

We hope that you will continue to follow us as we share more of our journey with you. People with DID need advocates and allies to join us in the fight to end stigma and improve services for those who suffer from the debilitating effects caused by the disorder.

Until Next Time,

K.D.+

The Queerly Connected System 10

In our next blog, “I (Do Not) Have Dissociative Identity Disorder” I will talk about being diagnosed with DID and my struggle to accept the diagnosis.

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Notes:

  1. A term used to refer to a person with multiple identities/Dissociative Identity Disorder
  2. A slang term used to refer to engaging in a sexual act for money
  3. The experience of feeling disconnected to oneself and/or their surroundings
  4. Fronting is when an alter comes forward and is presently conscious. If an alter is fronting, they are the one interacting with others externally
  5. In DID, a fragment refers to a total compartmentalization of a thought and/or action. Fragments can holds a single memory, handle one specific emotion or handle one particular task. While they are separate from other memories and identities, they are not fully-formed identities like alters are.
  6. a term referring to the collective identities of a person with DID
  7. a practice that can help you pull away from flashbacks and refocus on the present by utilizing techniques to distract oneself from unpleasant memories and reduce emotional flooding
  8. a freeze response is an autonomic response that makes a person unable to move or act against a threat or perceived threat. A fawn response is an autonomic response that forces a person to comply with an attacker or person perceived to be a threat in order to save yourself.
  9. the inability to recall important personal information that would not typically be lost with ordinary forgetting.
  10. It is customary in the DID community for multiples to name their system as a collective. It is a fun way to embrace multiplicity and refer to their entire system

One thought on “More than PTSD: The Mental Health Collapse That Led to My Diagnosis of Dissociative Identity Disorder”

  • K.D.
    I cannot comprehend the pain and confusion you were experiencing. Thank you for sharing so that others might be provided understanding.
    You are amazing and have lived a story that needs to be told.

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