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What life is like when you don’t feel real

deperson

Depersonalisation and derealisation disorder leaves sufferers feeling like nothing around them exists – including themselves

This week (May 16-22) is Mental Health Awareness Week, with “relationships” as the theme. We’ll be running features all week about the mental health of those close to you, the mental health of the artists that inspire you and the different ways that communities and individuals deal with the issue. Slowly but surely, progress is being made in the ways in which we discuss a problem that affects each and every one of us.

Imagine. One day you wake up and when you take a look in the mirror you struggle to recognise your reflection as your own. Even worse, after that you constantly feel like an onlooker watching your life unfold in front of you like a dull scene in a bad movie, having completely lost the ability to connect with those around you because you’re too preoccupied with trying to work out why you feel so strange.

These are the terrifying symptoms of a dissociative disorder often referred to as DP/DR (depersonalisation-derealisation disorder). Trauma or bad drug experiences can trigger it, and it can last anything from a few hours to a number of years. This bizarre and barely mentioned condition leads people to feel detached from their bodies, emotions, surroundings – even their families. From the moment the symptoms set in, life becomes a constant battle to come to terms with an overwhelming sense of unreality where the concept of ‘self’ is almost impossible to grasp.

So, as part of Mental Health Awareness week, we spoke to a few people to find out what it is really like to be permanently detached from reality.

“It’s really hard to focus on things that require critical thought or memory. I've tried mindfullness but that actually made it worse” – Sophie

SOPHIE, 19, LONDON

“Looking at yourself in the mirror or hearing your voice come out of your mouth is really strange with DP/DR as you don't feel like any of it is real. Then that spirals into you feeling like nothing is, and like you're just a floating overly emotional string of thoughts, all alone in an odd reality. Usually it goes away after a few hours or a few days, but I've had it for two and a half years now.

DP/DR often accompanies anxiety and depression – usually amplifying them. Actually, the symptoms are really common. Most people experience it at some point, usually when exhausted after a long day or stressed. Smoking pot, or other psychedelic drugs, can also induce it. It's just complete mental exhaustion, like brain fog. Right now my head feels very cloudy, my eyes feel droopy and I just want to shut them and lie down. My mind keeps wandering and it’s really hard to focus on things that require critical thought or memory. I've tried mindfulness but that actually made it worse.

Mental illness is an incredibly lonely experience. You can have great friends who understand what you're going through and are supportive, but that doesn't really help. My school, in my opinion, only pretended to be really supportive. Despite having a support system, a feeling persists that people will think I’m playing the victim. I think that is really just a reflection of the social stigma around mental illness. You know, the stereotype of a Tumblr teenager, someone who's always talking about their anxiety and depression and 'wallowing in self pity'.

It is annoying that depersonalisation and derealisation are such long and awkward words to use in conversation because that adds to the difficulty of talking about it with people day-to-day.”

JOE, 19, LONDON

“I remember feeling very scared and confused during my first DP/DR experience. I kept explaining to my parents that I just felt wrong. Everything around me and in my head felt wrong. Many sufferers describe DP/DR as feeling like being in a dream or watching a movie of yourself. I had been out for a walk. It was late when I got home so I went to bed where I lay thinking depressed thoughts as I was trying to get to sleep. Then suddenly I started having a small panic attack. I felt my heart racing and my chest getting tight. I rolled over on my back and tried to control my breathing. Then, as if a switch was flicked in my head - DP/DR happened almost instantaneously.

The first thing I noticed was that I had lost all of my emotions. I had no sense of what they were, except dread. I looked in the mirror and at my reflection and it was like I didn’t recognise myself – like I knew who I was but I didn't feel like I knew who I was. I woke my parents up because I was so extremely distressed by what was going on. My mum tried to comfort me and I felt her hand on mine, but it's like all I could feel was the physical sensation of her trying to comfort me. I didn’t feel like I knew who she was. I thought I’d never feel my mother’s love ever again. I looked out the window at the back garden that I grew up with and didn’t feel like I recognised it. It was like none of my memories belonged to me.

Depersonalisation is a terrifying condition. Psychologists believe it is a survival tool the brain uses. It 'numbs' emotional responses, which can allow people to think rationally when they feel severe emotional trauma. For example, if somebody needed to escape from a burning building, depersonalisation/derealisation would kick in to allow that person to focus on escaping, rather than being overwhelmed by fear. After such an event, the dissociative state should lift. However, when DP/DR doesn’t lift it becomes a disorder and it’s horrible to live with.

“I get grossed out by my own brain. How can everything I sense and feel just be a result of this weird lump of fleshy gross matter in my skull? Nothing means anything anymore” – Joe

Because it’s drug-induced, from taking anxiety medication, I feel sometimes like I’m brain-damaged. I worry that I’m permanently messed up sometimes. My ambitions and hopes for the future also seem lost. Recently, I think about my senses and how bizarre they are. What sounds, smells and vision actually are and how they don’t mean anything. I get grossed out by my own brain. How can everything I sense and feel just be a result of this weird lump of fleshy gross matter in my skull? Nothing means anything anymore.

I attempt to distract myself from it by reading. I make music too. Producing (music) can be very good at distracting me because I can get really into it. I bought a self-help book on DP/DR and reading that, along with reading people’s success stories on getting through depersonalisation, has been the most help.

I would encourage any other sufferers to keep themselves busy – even if it's super difficult at first. Even if the world doesn't feel 'the same'. Whatever hobbies and activities you did before, just get back into them. After a while, things will improve. If you feel on the cusp of going crazy, just breathe and focus on your surroundings. Socialise with friends and try not to cut people off.”

AUSTIN, 25, SAN FRANCISCO

“I've had symptoms of DP/DR as early as 15. Of course, back then it was infrequent and inconsequential. More like a ‘huh?’ feeling, or a ‘life doesn't really feel real right now’ moment. It started to pick up at 17, in intensity and frequency. I started to wonder at some points whether it was just me or if this was a normal state of being for everyone. I thought perhaps it was just how adults minds perceived reality.

My symptoms peaked last year, after I graduated college. Now, I don't feel like I exist anymore. I am detached from my emotions and relationships. My long term memory has been impacted and my environment seems flat and sometimes blurry; it’s hard to explain. With this condition you feel like the real you is a little person inside your head, watching the world through a TV screen. Social interactions are difficult because there is direct correlation between anxiety and DP/DR symptoms. Another side effect is that time seems to go by really fast.

Overall, it's definitely decreased my quality of life. I've become more depressed, less social, motivated, and confident in my abilities. I have a hard time maintaining friendships because the condition deprives me of emotion and I can't feel love and affection. I don't feel grounded, ever. The only advantage is that I can be emotionally composed in stressful situations. I'm a functional human being but I'm basically uncomfortable 24/7. I'm currently working with a therapist to help me figure out what's causing this in me. 

“With this condition you feel like the real you is a little person inside your head, watching the world through a TV screen” – Austin

I have a hard time maintaining friendships and creating new relationships. I have struggled to maintain my four-year relationship because it's hard for me to feel love and affection. When friendships start to fade, I have to remind myself that deep down I know that I love these people, and that it's my mental illness that tricks me into thinking I don't care. Regardless, they are happy that I'm actively trying to get better.

As an artist, I have to try extra hard to be inspired. It's difficult when the things that used to inspire me no longer give me the same dopamine rush they used to. Escapism is a great distraction. Since reality is so uncomfortable for me, watching Netflix and surfing the web provide me with alternate realities I have more control over. Although my quality of life and productivity improved greatly when I ran out of episodes of Girls to watch.

Many who have been ‘cured’ said that all they had to do was simply not think about depersonalisation/derealisation and live life as if it's a non-issue. This has not worked for me. Others have reported success from various vitamins and/or medications. While I am a functioning adult, my mind is stuck in a ‘child’ state. I believe that the dissonance between my child mind and adult body/environment is what causes me to dissociate. For me, personally, I believe that my path to recovery lies in becoming one with myself.”

All interviews have been edited and condensed