Up Close And Personal With Dissociative Identity Disorder
Blessings come in all shapes and sizes, and sometimes in the most unexpected places. My blessing came in May of 2003 when I was diagnosed with Dissociative Identity Disorder (D.I.D), formerly known as Multiple Personality Disorder. When the diagnosis was made I let out a huge sigh of relief and thought, “Oh, Thank God I’m not crazy.” Then promptly panicked and thought “Holy crap, I must be crazy,” as the visions of Sybil and the Three Faces of Eve came to mind. I soon learned that although Hollywood’s versions make for good entertainment they are not reality.
While D.I.D. had its survival function, I paid a price. I fractured and created alters (fractured ego states) in order to cope. I could only experience pieces of life. While all my emotions and aspects of my personality were held by my alters, I could only consciously remember fragments of some events, and of other events I had no conscious memory. This was true for traumatic and non-traumatic events. It was through these fractured states that I experienced life. My alters were like characters in a play, all waiting in the wings for their cue (trigger) to come on and play their part. By the time I was diagnosed I had a large cast of very complex characters and I never knew when the scene was going to change, let alone the play.
It was not until I was diagnosed, that I realized that not everyone is like this. The scattered puzzle pieces that were my life started coming together and I learned why I had huge gaps in my memory and why I felt so disconnected from the world. Dissociating had become a hardwired and habitual response to any anxious situation.
When I switched alters, people did not notice a big Jekyll and Hyde change, or any drastic change in the way I dressed, talked or walked. In time family, friends and my family doctor were sometimes able to recognize when I had switched. They would have noticed a change in the inflection, volume, tone or cadence of my speech. A tilt of the head, a look away, or a change in body language, or the way I looked at them. They may have noticed different cognitive, levels, or a different behavior, or coping style. I would have slight facial changes that they said were hard to describe but they would know something had happened. A very observant friend mentioned that it was like a wave had passed across my face. Sometimes my emotions would come on very strongly and the intensity of them would be more than the situation required, this was especially true with anger. I’m sure there were moments when my behavior left others thinking, “What the hell was that all about?”
The switching would be accompanied by ringing in my ears, vertigo, blurred vision, trembling, queasy stomach and many other body sensations, as well as disorientation. Sometimes the switching was more obvious and looked like mood changes, especially when I was triggered. I was so disconnected from myself, that my family and friends would often notice the switch before I did, and often my body language was saying the exact opposite to what I was feeling.
When an alter was functioning I felt completely engulfed by whatever emotion they were holding. If the one who held joy was out, that’s all I would feel. You may ask “what’s wrong with that?” Well the problem is that’s all I would feel. I would be like a little kid on Christmas Eve; so excited, happy, buzzing and overwhelmed that I was unable to soothe or ground myself. I would feel the same intensity for the alters that held the anger, sadness, grief, shame etc. This is the all or nothing way of feeling that is characteristic of alters.
I would make decisions while in these altered states, which may have seemed like a good thing at the time, but were not. Being asked, “Why did you do that?” was not helpful to me because I already felt enough shame for the action/decision I made. The chances are that I was not the one who made the decision. What I did find helpful was to be asked “Can you think of any trigger at the time before, or did you feel any sensations before that?” These alters were developed when I was a child so they were all operating from “kid logic.” They do not have the awareness and ability to view their actions, behaviors or the world, in the more complex way of adults.
By 2003 this coping style was no longer working. It had caused severe disruption and confusion all my life. Up to that point I did not know of any other way to cope, but the proverbial penny had dropped and there was no going back. I needed to be authentic with myself if I was to move on, yet this was a very scary place to be.
I had spent most of my life being numb. For the first time in my life I began working at staying in the moment; not only noticing the switching but feeling the physical and emotional pain from the past. It scared the crap out of me. I think of it as how an addict might feel during recovery. Could I indeed live in the moment and feel life, past and present without dissociating?
As my therapy evolved, I slowly learned to trust my psychiatrist, and subsequent counsellors, to feel safe enough to begin gently peeling away the façade that was my life. Without the use of my habitual defense mechanisms, raw emotions and sensations were being exposed, felt, and looked at for the very first time.
My protective alters did not like this one bit. They remembered me being threatened with harm if I ever talked about the abuse or the pain. Operating on “kid logic” they believed if they convinced me to engage in destructive behaviors or self-harm they were keeping me safe. This also prevented me from feeling the physical, emotional and psychological pain of the abuse.
This was very confusing to me and those around me. While one alter wanted to harm me and shut me up, another knew I needed help and had to deal with it. It was an intense internal battle that wore me out and must have looked like some bizarre behavior. It was like having a reality TV show about a very dysfunctional family living inside me, and I was being pulled in all directions.
In time, with great support and acceptance, I was finally able to talk about what had never been spoken about before. I no longer needed to keep stuffing it down only to have it erupt and leak through the seams into my life, or dissociate to work through the events that caused me to split in the first place.
I have been fortunate to have knowledgeable and caring professionals and very supportive family and friends along this healing journey. My family doctor had not heard of D.I.D. but was open minded enough to listen to me and my psychiatrist and counsellors to learn how best he could support me. They have all included me in my recovery, allowed me to express what works best for me and worked with me through this.
It has not been easy and there were many times I did not know if I was going to make it. There have been many struggles along the way and one of the biggest was to begin to break the misconception people (the public and professionals alike) have of this condition.
According to the International Society for the Study of Trauma and Dissociation, studies show that “1.1 % to 3% of the general populations have D.I.D.” “This puts the prevalence of D.I.D. as at least equal to or higher than schizophrenia, which is about 0.5% to 1.5 %.” (American Psychiatric Association, 2000, p.308, Howell 2011). Of that number only 6% percent will have the extreme change in behaviors that are obvious (Kluft 2009, Howell2011).
Those of us with D.I.D. spend an average of “5-12 years in the mental health system before being correctly diagnosed” (Howell 2011). We also often have co-morbid conditions such as addictions, P.T.S.D., depression, eating disorders etc.
Dissociative Identity Disorder is a reality and as long as young children experience prolonged, overwhelming, and horrific circumstances it will continue to be a reality. The foundation of this disorder is a very creative and remarkable defense mechanism that allowed me, and allows many others to survive. By creating alters to deal with the traumatic events of my childhood, I was able to survive hopeless situations that were impossible for me to accept. As my family doctor told his colleagues, “This is what happened to her. This is how she dealt with it. And this is how it’s affecting her life now.” That sounds simple enough to me.
Being correctly diagnosed has been a gift. It’s been a long and rocky road, but I am grateful for it and to those who have travelled with me. I have a very full, rewarding and rich life. The people who are in my life know I have D.I.D. It’s no secret.
I am captain of my dragon boat team, play golf and ringette and am working on my memoirs. I volunteer in various organizations and am a much loved member of my community. I have spent the last few years advocating and educating others about D.I.D. In the last 6 months I have talked to the grade 11 psychology class at the local high school, given a presentation to the North Island College R.N. practicum students at the local hospital, and have started a blog and facebook page about the daily challenges of living successfully with this condition.
I meet regularly with my family doctor’s medical/practicum students and let them know what this condition is all about and how best they can help their future patients. It’s been a lot of work but it is worth it. I appreciate the fact that I now have linear memory which allows me to remember having lunch with my son or going for a walk in the woods. I am able to feel connected to myself and those I care about and am now relaxing into life, as opposed to reacting to life. These truly are blessings.
Howell, Elizabeth, (2011) Understanding and Treating Dissociative Identity Disorder: A Relational Approach. N.Y.:Routledge ISBN 978-0-415-99497-2