‘I’m not me’: A bizarre disorder leaves people feeling distant from their bodies

Becoming a stranger to myself took me to the edge. In exile from my body, I was terrified of being trapped within the void of self and succumbing to the desire for suicide.

I would stare at my hands and think, “I’m not me.” No matter where I was, in the middle of a busy street or at my dining table at home, the condition would be the same. It was like looking at my hands through a plate of glass. Although I could feel the skin on my palms, it did not feel like my own. Half of myself would move through the day while the other half watched. I was split in two.

Nothing I did would relieve the condition. I went to see an ophthalmologist, convinced I had cataracts. The verdict was near-perfect vision. I tried taking time off work, talking with family and writing notes about how my life had become a simulation. Each morning I would stare at the mirror in an attempt to recognize myself, but the distance between my body and this new, outer eye only grew larger.

I began to believe I was becoming psychotic and would soon be in a psychiatric ward. I was a 28-year-old, working as a copywriter while pursuing a PhD in art history, and I felt my life was nearing its end.

One evening in April 2008, as I contemplated another helpless night trapped beyond my body, full-blown panic set in. I took up the phone, ready to dial for an emergency, when suddenly music began to play from downstairs. It was a nauseating pop song that my neighbour played incessantly, but something about the melody gave me pause.

The next day I began a series of frustrating doctor’s visits. First with my physician, then a neurologist, gastroenterologist and chiropractor. I said that I had never taken drugs or drank alcohol excessively. While I was fatigued from my doctoral study, I didn’t think this qualified me for the split in the self that had occurred.

The diagnosis was anxiety-related depression. I was prescribed the antidepressant Duloxetine and told to use an online guide to CBT, or cognitive behaviour therapy, which used cartoons to ask me basic questions about relationships, diet and sleep.

Things got worse. I borrowed money to see a neuropsychiatrist and asked how I could possibly return to my body. He said that I had been misdiagnosed and that, in fact, I was suffering from depersonalization, a neglected and little-understood disorder first documented in the late 19th century by Swiss philosopher Henri Frédéric Amiel. “I find myself regarding existence as though from beyond the tomb,” he writes. “All is strange to me. I am, as it were, outside my own body and individuality; I am depersonalized.”

According to Elaine Hunter, a consultant clinical psychologist who has recently set up a specialist depersonalization clinic in London, it is like “a psychological fuse box being switched off involuntarily. The patient often complains of feeling emotionally, physically and cognitively numb.”

She tells me that while fleeting depersonalization is a common experience, especially given the overstimulation of our digital age, it is very different from developing a chronic disorder, which is what I had, where the change in the experience of the self is persistent and intractable.

The lack of global awareness when it comes to the disorder, particularly in regard to its scale, is a huge issue.

“Most doctors and psychiatrists are trained to believe that depersonalization disorder is extremely rare, and when present, is usually a secondary symptom of another condition such as anxiety or depression,” Hunter says. “This leads to frequent misdiagnosis, and then further suffering for the patient. It’s like trying to fix a knee problem by treating the chest.”

For many years, Daphne Simeon led a similar depersonalization clinic at New York’s Mount Sinai School of Medicine, specializing in a variety of psychotherapy and psychopharmacological treatments. In Simeon’s book on the disorder, “Feeling Unreal,” co-written with Jeffrey Abugel, she quotes from a patient named Joanne:

“I’d really rather have cancer than this. With a disease that people know, you can get some degree of empathy. But if you try and explain this, people either think you’re crazy or completely self-absorbed and neurotic. So you keep your mouth shut and suffer silently.”

This was my experience. Trying to articulate the condition and have clinicians comprehend its gravity was the greatest obstacle. Following my initial onset, I searched for answers in Jean-Paul Sartre’s novel “Nausea” and came across this passage where the writer Antoine Roquentin muses on his lot:

“Existence is not something which lets itself be thought of from a distance; it must invade you suddenly, master you, weigh heavily on your heart like a great motionless beast – or else there is nothing at all.” This nothing – this void of self – is what I felt.

In R.D. Laing’s book “The Divided Self,” he quotes a 28-year-old patient named James who is suffering from the disorder: “The complaint he made all along was that he could not become a ‘person.’ He has ‘no self.’ ‘I am only a response to other people, I have no identity of my own.’ … He felt he was becoming more and more ‘a mythical person.’ He felt he had no weight, no substance of his own. ‘I am only a cork floating on the ocean.’ ”

When I speak with James Charney, a psychiatrist at the Yale School of Medicine, he says that people suffering from depersonalization are egodystonic, meaning their thoughts and behaviours are in conflict with the needs and goals of the ego. “The patient becomes alien to their ideal self-image, which is crippling and can destroy their lives and those around them.”

According to studies in the United States and Britain, depersonalization affects 2% of the population – 6.4 million in the United States and 1.3 million people in Britain. This is about the same as schizophrenia and bipolar disorder, conditions that are much better understood. Although the disorder’s criteria have been expanded in the latest edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5), it is still largely neglected by doctors as a condition in its own right.

So what causes it? Hunter tells me recent research has discerned three main categories: trauma, acute anxiety and drug use.

“If a person was neglected during childhood or was abused, this can be a trigger. Using cannabis, ketamine or a cocktail of drugs can also provoke an onset by triggering panic due to a ‘bad trip.’ In your case, Nathan, it sounds like it was brought on by extreme interpersonal and occupational stress. I know we don’t usually think of those things as resulting in a split of the self, but the fact is it happens all the time.”

Cognitive behaviour therapy is the most common form of treatment, despite mixed results. This involves emotion mapping and processing, along with charting the origin of the self in childhood with its associated image-memories. The idea is for the patient to build a bridge between “I” and “myself.” By reducing symptom monitoring and safety behaviours, over time the outer eye is able to reassimilate with the body. A more recent form of treatment is the introduction of mindfulness in a clinical setting. But this is somewhat controversial, as there have been studies to suggest mindfulness can actually increase symptoms of depersonalization.

Because the disorder is widely considered to be a psychological phenomenon, as opposed to the result of a chemical imbalance in the brain, drug treatments such as antidepressants are often ineffective. However, they may help reduce co-morbid symptoms of depression and anxiety. Since 1980, there have only been a handful of drug trials specifically related to depersonalization. Several show that combining Lamotrigine with an SSRI can be effective in patient recovery, while a pilot study from 2001 treated patients with Naloxone, a drug commonly used in opioid addiction treatment. Although this study was limited to 14 patients, in three patients the condition disappeared entirely, while seven patients showed a marked improvement.

Becoming a stranger to myself took me to the edge. In exile from my body, I was terrified of being trapped within the void of self and succumbing to the desire for suicide. Like many of those with depersonalization disorder, my recovery was gradual. It only began when I became aware of my true illness. With knowledge on my side, I was able to navigate the symptoms and accept that the sense of uninterrupted selfhood I had known was gone. I had to learn to live as an altered person – as an “other” – with my mind and body in a suboptimal state. Daily swimming and weekly visits to a psychologist helped this. Only in learning how to wake and sleep in the void, without fear of death, did my primitive, bedrock sense of self-return.

Although I have relapsed several times in the decade since my diagnosis, with increased awareness and new forms of treatment, my hope is that those of us with the disorder can truly be free of its nightmare.

 

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