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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 emergency, when suddenly music began to play from
downstairs. It was a nauseating pop song that my neighbor 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 behavior therapy, which used cartoons to ask me basic
questions about relationships, diet and sleep.
A misdiagnosis
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.”
'I have no identity of my own'
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 behaviors 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 life and
those around them.”
According to studies in the United States and Britain, depersonalization
affects 2 percent 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 has 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.”
Treatment mixed results
Cognitive behavior 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 behaviors,
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.
