What It's Like Growing Up With Depersonalization Disorder
I was robbed of my childhood. Very quickly, I realized that my role as a child would not be adequately supported by the world around me. So very quickly, I grew up. Between the ages of 9 and 19, I slowly took on more and more as the role of my mother’s caregiver. I took care of her every need, until she took her last breath. Alongside that, I was trying to cope with the endless amounts of emotional abuse from my father. Those two elements, when mixed together, resulted in my development of depersonalization/derealization disorder (DPDR). And as I sit here today, nearly three years after my exposure to complex childhood trauma came to an end, I am completely immobilized by depersonalization and derealization and I wonder if I will ever be free from the weight of all that was.
I started to have episodes of DPDR as early as age 7. But by my teenage years, the symptoms engraved themselves into the fibers of my being, leaving me always, to some extent, dissociated from reality. The DPDR is sometimes subtle. Often it is just a small whisper in the back of my mind. But sometimes, when it flares up, the whispers turn to screams and I am completely thrown from reality. As a child, when trying to describe this feeling, all I could say was I feel like my soul has left my body. It took me several years to find the correct names for the feelings that I was experiencing.
I am motivated to write this statement now, partially because I am in the midst of a particularly dreadful flare up. It’s been several weeks since I had an “attack” in the middle of a department store and since then my DPDR has been actively scrambling to bring me down. I am now on day eight of a period that has felt like a dream. Every single moment of every single day has felt like a living dream that I cannot wake up from. I continuously expect to wake up the following morning finally back in reality, but this does not happen.
So here, I wait. And as I wait, I wonder what it will take to break this cycle. And as I wonder, I begin to feel anger and frustration at the fact that nearly 20 years of trauma were not enough in the sense of paying my dues. Not only did I withstand chronic stress and emotional abuse and the death of my own mother, but now I am left dealing with the repercussions. To anyone who has experienced abuse or trauma, this feeling of frustration may be familiar. As if it is not enough to experience and withstand horrific events, we are also left with the effects interfering with our freedom that we fought so hard to find.
DPDR is widely experienced, yet rarely discussed. The fear that DPDR creates can be hard to describe. It is incredibly frightening and incredibly discouraging. My first memory of experiencing depersonalization happened when I was around the age of 7. I was at my aunt’s house with my brother. We hardly ever spent time there. It was always a very hectic, tense environment that was not entirely comforting. In this memory my brother was blow drying my hair and we were standing in front of the mirror. I glanced forward at my reflection and did not recognize myself or my surroundings. My brain told me that the body in the mirror did not belong to me. Over and over I heard This isn’t you, this isn’t real. This is not happening to you. You are not the person that you see in your reflection. You’re not really here.
What happened to that girl in the mirror was not happening to me. The stress that she felt from her disastrous reality, I did not feel. The fear that she felt did not affect me. I remember telling my brother that I did not feel well, but being unable to provide an explanation. He took me downstairs and let me lay in my cousin’s bed and I watched “The Brady Bunch.” Distractions were the only way for me to cope with my symptoms.
Since that first incident, things like looking in the mirror or at photos of myself are some of the biggest triggers. Often, I look down at my hands and I feel that they are not attached to me. Hearing or seeing my name is another major trigger. I think, Who is that girl they are referring to? She sounds familiar, but she is not me. Any physical representation of my identity scares my emotional self into hiding away. You would think, logically, that when my brain whispers things like This isn’t you. This is not your life, I could respond by saying, “This is me. I am here in the present moment and this is my life.” But at that, my brain just laughs, shakes its head and walks away. Only to come back five minutes later with its whispers raised to screams.
When I was 17, I wrote the following journal entry:
I lay here hiding from it all
I pinch myself but the pain does not feel relevant.
I catch a glimpse of myself in the mirror and I do not recognize the face I see.
I struggle to catch my breath.
I feel my soul slipping away
Abandoning me for a safer place
I pinch the skin of my empty body
I struggle to catch my breath
I am living in a dream
I cannot feel the ground beneath me
I cannot remember my identity
I struggle to catch my breath
I want to get up and be OK
Before I lose all that I’ve gained
I see it slipping away
I struggle to catch my breath
Unless I am having a particularly heightened episode, DPDR does not generally interfere with my physical ability to do things. For the most part, I go about my day doing everything I am supposed to do, without any visible signs of distress. This is because, this is what my brain was trained to do. When things were too much to bear, my brain sent my emotional self away to a place where it was safe, and it left my body to do all the work. It was very clearly a defense mechanism that worked in my favor at the time. But now, here I am. Going about my daily life, feeling as if the entire world around me is not real. My brain has locked my sense of self away. It has locked up my identity and my ability to feel anything at all. It has locked up everything that could have possibly made me vulnerable. Yet now, I see things such as happiness, laughter, and joy all around me. Now, I am safe. Now, I am free. Now, it is OK for me to begin my life. Now, the past has finally come to a close. But the problem is, I can’t find the key. I can’t find the key to bridge the gap between my physical and emotional self. I can’t find the key that will allow me to feel attached to the joy that my body experiences. I can’t find the key that will allow me to experience love. I can’t find the key that will convince my brain that it no longer needs to dissociate from the world around me.
It may not typically interfere with my physical actions, but it does break my strength more and more each day. My brain is in a constant battle that seems to have no end. Remaining optimistic when suffering from DPDR symptoms is grueling. It is exhausting and depressing and discouraging and just plain brutal.
After my most recent DPDR flare-up began, I realized that this is the first time in my life that I have felt like I am worth fighting for. Before my mother died, I was always fighting for her, not for me. My identity was so intertwined with hers, that after she died, I felt like my life was vacant. But over the past few years, I have built a life for myself with a job that I love and great friends. I see it all around me, I see the life that I once longed for. I see it, and I want it. For the first time, I want to wake up and jump into the world. For the first time, I have genuine hope for my future. I am determined to not allow DPDR to control the outcome of my story. To not allow my trauma to win.
One of the best steps we can take in life is surrounding ourselves with support. I feel very fortunate to have friends who are supportive and willing to listen to me tell my story and with whom I can share my frustrations. I am also incredibly fortunate to have finally found a therapist who was willing to recognize my DPDR and to diagnose me with it. DPDR is so rarely recognized and that is a big part of the problem. The symptoms are so hard to understand within ourselves, that getting anyone else to recognize them is quite rare. Slowly, I have found support in people who are willing to listen to my experiences and I do believe that the best thing we can do is talk about it.
Spread the word because this particular disorder is far more common than it seems.
I refuse to allow my exposure to emotional abuse to have control over my life forever. I refuse to allow DPDR to break me. I appreciate it for protecting me from all that was, but now I am ready to let it go. I have absolutely no idea how to break the hold that this has over me, and I am hesitant to say that it will ever go away completely. But I do believe that things can be done to lessen the symptoms. It may take time, trial and error, and all of the strength that I have, but I refuse to let DPDR rule my life forever.
Getty photo by Victor_Tongdee