On Diagnosis and Depersonalization

In September 2013, I started experiencing symptoms of anxiety and depression. It was the beginning of the second year of my undergraduate degree in Scotland. The year before, I had left my school in Kenya and moved to St Andrews for University. I had struggled to overcome cultural and emotional barriers to build deep and meaningful relationships in my first year. Yet, I started my second year full of hope. This hope was quickly crushed.

The first symptom I noticed was loneliness. Every day I felt lonely and sad. I would return home every day and feel increasing despair. This quickly turned into anger and frustration. For the first time I felt constantly angry and annoyed (or at least since I had last played Fifa with my brothers). Soon a host of other struggles arrived. I cannot articulately describe the anguish I felt during this time. Although I have tried in other posts, so please read them!

These symptoms, as is common  with mental illnesses, were soon accompanied by more physical symptoms (psychosomatic symptoms). I started to be constantly tired. I developed insomnia. And I started to feel lightheaded and dizzy. This scared and freaked me out. At this stage, I was still in denial about having depression. I thought it was only for the weak. For every symptom that arose I became more determined to push through, without acknowledging my struggles. I thought I was being strong; ironically it was weakness driving these thoughts in me.

By November 2013 the physical symptoms intensified. My only similar experience was having a migraine. I lost feeling in limbs and was constantly lightheaded, dizzy, and zoning out. The few friends I confided in were concerned I was having a stroke or something (shows you how much medical knowledge we had!). It was a difficult time, compounded by reluctance to acknowledge my mental illness.

Whilst I would love to discuss anxiety and depression and share my own experiences, and have in other blog posts (please chat to me about it, would love to chat) this writing is to be about a depersonalization disorder. What I didn’t know at the time was that November 2013 was the first time that I started experiencing depersonalization/derealization symptoms. Whilst dissociative disorders are not common, dissociative symptoms themselves are surprisingly common. The Diagnostic Manual used by American mental health professionals (DSM V) says that about half of adults will have an experience with depersonalization/derealization symptoms.

If you are like I was a year ago, you will have never heard of depersonalization or dissociative disorders. So, I promise not to be too disappointed if you are not already an expert on the topic.

Dissociative disorders are complex mental health disorders which are caused by some sort of trauma (emotional, sexual, physical etc.) in childhood. They tend to be characterized by some sort of dissociation from reality or separating from reality as a defence mechanism. They affect the “normal integration of consciousness, memory, identity, emotion, perception, body representation, motor control, and behavior (DSM IV).” The way these manifests is different for each type of disorder. The main types are Dissociative Identity Disorder (DID), which is where different personas are created (used to be called multiple personality disorder); Dissociative Amnesia, where you forget autobiographical information; and depersonalization/derealization disorders. These disorders are a complex reaction to trauma where your brain/self/identity struggles to identify ‘you’ as ‘you’ because your brain stops communicating it properly.

Depersonalization/derealization is the disorder which I was diagnosed with in May 2019.
These disorders are kind of a pair of opposites which come together. Depersonalization is when you struggle to see your body as part of reality and derealization is when you struggle to see the world outside of your body as real. This is not a cognitive struggle. I know the world and myself are real, it just doesn’t feel like it. What I have is a depersonalization disorder. The word I think is best for describing the experience is disconnected. I have emotions but feel unplugged from them. I have a body but feel separate from it. Even though it is still me, it often doesn’t feel like it. When reading the rest of the blog, keep the word “disconnected” in mind.

I often feel like I am in third person. I look at my hands, knowing they are my hands cognitively, but they don’t feel like mine. I don’t have feeling in them and often the rest of my body. As I type this I look at my hands and they don’t feel like mine. It feels more like I am putting input into a program which makes my hands type.

The best way I can describe having it, like many situations, involves playing Fortnite. In the game you control a character in the third person. You see your character and control them. Your character is who you are. However, it isn’t you. It is just a character in a game. The input from a keyboard or controller determines what the character does. When I feel dissociated it feels as if my body is the Fortnite character. I can input information into my body, and it responds, but not because it is me.

During a bad episode, even things like walking or talking are challenging. To move, I have to think “right leg up, left arm up.” Prior to being ill, I would have said I was quite good at walking, even a natural. However, on a bad day it is far from natural and is complicated. It can be the same with speaking. Most people know me as someone who won’t shut up. However, when I have a bad dissociative episode, forming words and sentences is a chore mechanically speaking. These instances feel like me trying to give my Fortnite character a complex command. Walking and talking can become methodical and mechanical.

This affects every part of me significantly. Emotionally, physically, spiritually (and all of the overlap therein) and any other part of me gets affected by the disorder. I think I am not even aware of the toll it takes on me, particularly emotionally. It may seem to others that I am comfortable talking about, but I don’t think I am. I think that I am good at articulating it, but it is extremely difficult. I often find myself exhausted and emotional after discussing it. There is a sobering paragraph from the DSM IV which resonated with me about the consequence of having a depersonalization/derealization disorder.

“Symptoms of depersonalization/derealization disorder are highly distressing and are associated with major morbidity. The affectively flattened and robotic demeanor that these individuals often demonstrate may appear incongruent with the extreme emotional pain reported by those with the disorder. Impairment is often experienced in both interpersonal and occupational spheres, largely due to the hypoemotionality with others, subjective difficulty in focusing and retaining information, and a general sense of disconnectedness from life.”

This is a clinically significant and challenging illness. I have already spent one year unemployed because of it. I am just starting to come to grips with how much it affects my life and the challenges that it poses.

Usually, these disorders don’t last too long, often weeks. I don’t mean to brag, but I have been nailing it for 6 years now. I would also like to brag about the non-sexist nature of the illness with a gender ratio of 1:1. Say what you like about me, but I am not sexist (or as my wife pointed out, my disorder isn’t).

The cause of these disorders is usually experiencing trauma as a child. Depersonalization disorders tend to be less caused by sexual trauma than the other dissociative disorders. I was never sexually or physically abused as a child, so we know that it wasn’t caused by that. It is likely it was caused by some of the emotional trauma of growing up as a missionary kid in East Africa and then triggered as I developed severe anxiety and depression at university. I am on the wait list to see a psychologist and hopefully God will use that to bring healing.

Writing this is extremely tough. I have wanted to since I was diagnosed, but have just managed it seven months later. Emotionally this illness has affected me more than I have realized and it isn’t fun. Would not recommend. But I want to keep honouring God whilst being ill. He knew that I was going to be ill and He has a plan for me in the illness. I look forward to a day in heaven where there is no illness and I will have a much more functional body.

In the future I would like to write more about what it is like experiencing these symptoms and living with a disorder like this. But I have written all I can write for now. And definitely don’t have enough energy to correct another misspelling of the word dissociation. Please ask me more questions about this or anything else. It is really important that discussions about mental illnesses are realistic, holistic, and regular. So please, let’s talk and pray about them more.

It would mean a lot if you would share this or other blogs. It is immensely encouraging to me to see people speaking in a healthy way about mental illnesses.