‘I felt like a puppet': A midnight swim leads to a long-term mystery illness

Sydney Morning Herald

3 days ago

This story is part of the May 31 edition of Good Weekend. See all 14 stories.
On a winter night in London, my girlfriend and I decided to go night swimming. On Hampstead Heath, we shed our clothes at the edge of the pond and waded into the shallows. Stars shimmered on the water and a half-moon bobbed in the inky black. It was so cold we could see our breath. Swimming out to the middle, we fingered mosses and reeds, then began diving under the water and coming up in wild leaps, splashing one another.
In the midst of our game, something happened. I was hit with a great force, torn in two, ripped from myself. I swam frantically towards the bank, trying to reach solid ground. Even though my head stayed above water, it was like a great hand was trying to push me down to the bottom of the pond. Bent over in the shallows, I clutched my chest, trying to hold my sense of self together. I was leaving my body. There was nothing I could do. I cried, tears streaming. I couldn't stop. My whole face began to shake, my cheeks going into spasms and my limbs shaking violently. My girlfriend's voice was far away. 'Nathan, Nathan. Can you hear me?' Naked before her, dripping with water, I said nothing in response. I couldn't.
I stared at my wet hands. They were ghostlike, not my own. I had disappeared, and what was left of me was only a shell. One part of my elf was empty: a dusty, windswept space. The second part of myself was in a state of confinement. I felt like a puppet, manipulated by something, or someone, outside my body.
I turned around to brush away this feeling of being watched, but my second self stayed behind my back. It was looking at me but I couldn't see it. I had no sense of its form or how this second self was moving me around, only that the awareness of 'me' was now gone. 'I am 28 years old,' I said to myself, trying to believe it. 'My name is Nathan Dunne.'
Three years passed before I understood what was happening to me: I was experiencing depersonalisation. Its onset provoked a profound loss of identity. Like many with the illness, my response was to say, 'I'm not me', 'I have no self' and 'I am no one'. This was an attempt to describe the feeling of a severe dissociative state, the onset of mental illness, pure terror. My identity had always been intrinsically tied up with my body, fundamental to my self-consciousness. But with depersonalisation, being in its vice meant a terrifying challenge to long-held assumptions about my existence – the notion of 'me'. I struggled to explain my symptoms to doctors. Phrases like 'I feel invisible' and 'I have a dark pain' led to a misdiagnosis of anxiety-related depression. The prescribed blue pills I took caused terrible side-effects – stomach cramps, heartburn, vomiting, a stiff jaw. I sweated uncontrollably, lost my appetite, and became even more exhausted, legs tangled on the lounge.
In Australia, it affects 2 per cent of the population – 500,000 people. Yet a correct diagnosis can take years.
In my confusion, I searched medical journals for clues and stayed up late pondering rare diseases, compiling a Word document I saved as 'The Possibles'. Rearranging the document was like prodding a wild animal. I'd move one disease into a new column, or onto a new page, and it would immediately lash out, more alive in me than ever. I was constantly rating them. Bipolar disorder would get 8/10, then I'd bump it down to 6/10. Wolfram syndrome would be flying steady at 3/10, only to abruptly climb up to a bewildering 7/10. I'd print the document out, underlining symptoms with fat blue lines and scrawling notes to myself across the top of the pages. Things like: Blood thing probable, but check page 7. Could be muscular and optical combined, see page 14.
It was not until I returned to Australia and found Dr C, a man of great clarity and insight, that I came to understand the true nature of my illness. The swim was the catalyst for my acute stress and genetic predisposition. 'Reading your file has convinced me that your accurate diagnosis is a mental illness called depersonalisation.' For the first time, I said the word aloud. How had I never heard of it before? Now that it was on my tongue it seemed so obvious. The person I knew was in confinement.
According to research conducted by the Pew Research Centre in Washington DC, the global DSM-5 Research Group and a team of international doctors who specialise in depersonalisation, it is estimated that more than 75 million people worldwide suffer from the illness. In Australia, it affects 2 per cent of the population – about 500,000 people. In the United States – 6.4 million. In Britain, it's 1.3 million.
'It isn't depression, or anxiety,' says psychiatrist Daphne Simeon. 'Often, it emerges with cruel ferocity as a chronic disorder completely unto itself. Its destructive impact on an individual's sense of self is implied in its very name – depersonalisation.'
My feeling of having no self meant that I remained outside my body as a detached observer. For me, the vantage point of this detachment felt like being in a specific place, a damp, black box. But for other sufferers, like Amanda, a 43-year-old office assistant, 'It is as if the real me is taken out and put on a shelf or stored somewhere.' Alex, a merchant marine, says: 'It was something like waking up to find that you're in a coffin, buried alive. Only the coffin is your body, your very existence.'
Based on National Health Service data from the UK, a diagnosis for depersonalisation typically takes between eight and 12 years: a shocking statistic. The long wait occurs because doctors are trained to be sceptical of potential outlying diseases. When someone presents with a cough, it's usually a cold. Ankle pain? Probably a sprain. There's little incentive to search for obscure explanations when a common one will do. But with an illness like depersonalisation, which is easily mistaken for depression, patients like me are misdiagnosed and wait years, through trial and error, for a correct diagnosis.
Although it was first named in the 19th century, depersonalisation has long been misunderstood and dismissed by the medical establishment. Until 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM) described it as merely a symptom of dissociation. Only in its most recent edition was it recognised as a disorder in its own right. Yet the DSM is a clinical resource used primarily by doctors, so the delay in identifying the condition contributed to a lack of public awareness and leaving most patients in the dark.
Recent research suggests that the rapid growth of virtual reality (VR) has led to an uptick in cases. VR headsets immerse users in an unreal world. Much of digital culture relies on masks: avatars, emojis and filtered selfies. But these headsets are literal masks that plug into an alternative reality. Some behavioural scientists predict that by 2030 we will spend more time in simulated digital environments than in the physical world. With this profound shift in our way of life, depersonalisation cases are expected to increase dramatically.
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The process of writing When Nothing Feels Real took many years. In June 2022, it felt impossible to keep going, and I suffered a major breakdown. I interpreted this as a warning not to continue, that the cost of my scribbling was too high, that my poor health simply wouldn't allow it. But several people in the community of depersonalisation sufferers assured me of the book's worth, and supported me, day and night, through the worst of the hours. Some literally sharpened my pencils. Their unwavering devotion and belief in my story, and the need for our collective stories to be heard, is what ultimately gave me the strength to finish. My hope is that with greater public awareness, there will be improved treatment options and funding for research. Most importantly, there needs to be a shift in how doctors are trained to identify the illness. We need to change the conversation from one of limited engagement and indifference to one of urgent need. Only then will there be a 'cure'.
Since the onset of my illness in London, I've been through numerous stages of relapse. As I sit at my desk today, the best way to describe my current state is that I have partially recovered. Some trace of the illness will likely always remain. One of the hardest things has been accepting this – not just the symptoms, but the inability to go back in time. In therapy, I've sifted through every inch of sand: childhood, work, relationships. Only recently have I been able to reframe my need for answers. These days, I carry a realisation: acceptance is never really acceptance – it's surrender.