What It’s Like to Live With Depersonalisation Disorder

Depersonalisation disorder affects 1.3 million people in the UK – so why does no one really know what it is?

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14 October 2015, 1:05pm

Artwork by Nick Scott

I was 16 when I first experienced depersonalisation disorder. Looking back, I feel like the onset was pretty much inevitable; my parents had separated a couple of years earlier, and I responded by developing an eating disorder and depression. Then my mum met my stepdad and we moved to be with him – first to a tiny village in Yorkshire, and then to Texas. The first transition had felt like a stab in the gut, the second pushed me to breaking point.

It was my first day of high school in Houston when everything changed. Walking past the blue and orange walls of the seven-mile-long corridors, I felt a haze begin to spread in front of my eyes. People in my classes would enquire enthusiastically about my "British-ness", yet I couldn't relax in their company. I found myself acutely aware of everything around me. My senses were skewed; everything sounded miles away and my eyes hurt from the bright artificial lights. I felt disorientated and lost. I felt scared. What was happening to me? Why did everything look so strange? Why did I feel as if I was in a dream? I'd lost the plot, I reasoned. I was going fucking insane.

Depersonalisation disorder, known as DPD, significantly affects up to 2 percent of the population – that equates to 1.3 million people in the UK. One study even suggests that up to 50 percent of adults in the US will experience a brief episode of depersonalisation in their lifetimes. There is no definitive cause, although traumatic experiences, stress and using hallucinogenic drugs are all thought to be triggers. There's also an undeniable correlation between the disorder and other anxiety-related conditions – I have always been an anxious person.

What is known about this under-recognised, misunderstood phenomenon is how it produces a robotic, emotionally numb, suffocating feeling in the sufferer. Some can't recognise their image in the mirror and suffer loss of sensation in parts of their body. For me, it was like my brain couldn't take any more and entered a state of detachment – my mind attempting to buffer me from any more harm.

The only time I'd ever felt like this before was when I was 15 and I went with my friend to her older boyfriend's house. We smoked a lot of weed and I was given what I think now was probably ketamine. I didn't really know anyone there, and when things started getting weird there was nobody to reassure me. I sat on the side of the bathtub rocking back and forth – I was convinced that the grime-covered walls around me were illusory.

By the morning, those feelings had passed. Surely this meant they would now pass again. I shook my head hoping the mist would clear. But it didn't. For some, the symptoms of depersonalisation last just hours. But weeks later I still felt like I was watching the world from a seat set deep in the back of my skull, disconnected from myself, my family, even my own fingertips.

Each day I would wake up as if in a trance. I would put on a brave face and go to school, where I would be unable to concentrate on anything, owing to my constant fixation and rumination on everything I was seeing and thinking. Eventually I'd get myself so worked up that I'd have to bow out of class and seek solace in the nurse's room, where I would lie on a bed while the world closed in on me. How could I explain this to the new friends I had made? How would they understand, when I couldn't? I was convinced I'd "lost it", and I was ashamed.

I would come home on the yellow school bus, mentally annihilated, and spend my evenings self-diagnosing on Google. This led me down a hole of DPD forums that were full of bleak stories of years and years of misery. The terror this induced propelled me into panic attacks. I was never going to get better. Nothing was ever going to be the same. At the weekends I'd drink myself into oblivion – being intoxicated masked my never-ending flurry of thoughts for a little while.

A commonality among depersonalisation and derealisation (an associated disorder that is categorised by seeing other people and the environment around you as dreamlike and unreal) sufferers is the ingrained fear of insanity. Unlike other dissociative disorders, though, people who experience DPD are still very much in touch with reality. You're implicitly aware that your perception of your body and the world are not in any way "normal". It's this awareness that makes it so bloody frightening.

Twenty-three-year-old Chloe* tells me that the first time she experienced depersonalisation she was 19 and working in a pub kitchen. It came on seemingly out of the blue. "Suddenly it felt like nothing around me was real," she tells me. "I felt like I couldn't communicate with anyone, like I wasn't hearing them or I wasn't speaking. I was convinced I was saying my thoughts out loud."

She never went back to work after that, convinced she'd "gone mad". This fear caused her to become reclusive and keep everything to herself. After a few months of this she was put on medication to treat anxiety, which wasn't effective. "Cognitive behavioural therapy helped me a lot," she explains. "I had a really nice doctor who would set me totally ridiculous tasks to complete, like standing in a queue in Tesco's until you feel your anxiety has halved. The most helpful thing was being honest about it, though. Once I'd looked into it enough that I knew I hadn't just gone crazy, I could start trying to explain what was wrong with me to my parents and my friends, and look for help with coping with it."

READ: The VICE Guide to Mental Health

Jessica*, a Fine Art graduate, has suffered with the disorder on and off ever since she was a child. Since the age of 18, though, she's found it increasingly debilitating.

"I find myself really longing to feel sad or angry, as these are such refreshing and healthy surges of energy as compared to the emotional wasteland that is depersonalisation," she tells me. "I have often struggled to create work because I have felt too numb and consequently have had no urge to create anything. This has been a huge source of frustration to me."

Her methods of coping include maintaining a healthy lifestyle and finding release in early morning runs, swimming, cooking and listening to music with heavy bass, which she can feel. These, she says, anchor her in reality and help her overcome the visceral sense that everything is "made of cardboard".

Seven years later, I still live with DPD. I've never been able to shake it completely. Yet, over the years it has eased; I find myself most at peace when I'm outside, particularly in the countryside. The symptoms only become really uncomfortable when I'm tired or hungover. But I can't help but feel that my recovery was hindered a lot by the "experts" I initially saw in Texas. They took sips from Coca Cola cans and nodded approvingly while I sat on the sofa quietly being swallowed.

Herein lies the issue with the disorder: people just don't know what it is. This lack of awareness, even among mental health professionals, leads those living with it to feel isolated, fearful and convinced that things will never get better.

The Depersonalisation Research Unit at Maudsley Hospital in South London opened in 1998. It's the only department of its kind in the UK, and it is spearheaded by the amazing Dr Elaine Hunter. "I think potentially everyone can experience this," she explains about the symptoms of DPD. "It's something that's a bit innate in all of us. We all have a sort of trip-switch within, but with some of us it's a lot more sensitive than others."

The clinic has provided hundreds of people with a place to speak about their experiences and receive treatment through a specialised version of CBT that helps to pinpoint predisposing and precipitating psychological factors that may have triggered that so-called trip-switch. "A lot of the time," Hunter says, "patients will sit down and just burst into tears out of happiness that they're finally understood."

I'm told about a particular patient of Hunter's who, through therapy, has trained himself to understand his depersonalisation as just "a bit of a headache". 'Probably tomorrow, or in a day or two's time, it will be better,' he reasons. Probably, it will.

*Names have been changed.

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