"You're going to think I'm crazy," Callum said, looking down at his hands as he wrung them together in his lap. "It's just that everything feels like a dream. I know I'm not dreaming - I mean - I think I'm really here, but at the same time I'm not sure. Everything feels off somehow."
Author
- Emma Černis
Assistant Professor of Clinical Psychology, University of Birmingham
A deep sigh. "No one gets what I mean."
The slim 18-year-old across from me looks defeated, dejected and thoroughly fed up. This is typical in my line of work. Not just because I'm a mental health professional, so I rarely get to meet people who are in the middle of the best time of their lives, but because I specialise in dissociation and depersonalisation.
Callum, sitting in the armchair of my therapy room, meets the diagnostic criteria for depersonalisation disorder : a disorder that is baffling in so many ways.
With its main symptoms being a profound sense of detachment and unreality, the disorder perplexes those who experience it. "It just feels so strange!" exclaimed one client. "It's like constantly being several beers deep - but much less fun," explained another.
Common descriptions include being stuck in a bubble, trapped behind a pane of glass, or viewing the world from very far away. People also describe a feeling of unfamiliarity, as if their own thoughts and memories - even their own body - belonged to someone else.
Unsurprising, then, that people experiencing depersonalisation disorder spend many hours ruminating on what could have caused these odd sensations, why they recur, and what they can do to stop them. In my time, I've come across more than one person who has even had a brain scan to search for tumours they assume must be causing the problem. It is also fairly common for people to explain that they had a "bad trip" using cannabis and never returned to reality .
Ironically, it is this constant worrying that is thought to be to blame for the persistence of depersonalisation disorder. By always focusing on the strange sensations of the disorder, people accidentally guarantee they will notice even the subtlest sensations. And by fearing them, they further increase their vigilance - and their stress levels .
Because the surprising truth is that the experiences of depersonalisation and derealisation that define depersonalisation disorder are extremely common and entirely normal , especially when under stress .
So why is Callum not the first to tell me that no one will understand his experiences? Why is it so hard to find someone who understands?
The most obvious answer is the lack of language we have for depersonalisation and derealisation experiences. They are subtle, subjective, slippery things that are difficult to accurately pin down with words .
They are also aspects of our own highly personal sense of reality that we rarely have conversations about with others. The first days of the COVID lockdown were probably the only time that discussing the strangeness of daily life became a social norm. ("It feels like we're living in a movie, doesn't it?" says a colleague's disembodied voice over Zoom).
Not enough awareness or training
The trickier answer, however, is that the vast majority of mental health professionals receive no training about dissociative disorders . As a result, people arriving at mental health services complaining of depersonalisation are sadly highly likely to have their symptoms missed or misunderstood .
This is perhaps why in the UK, it takes an average of eight to 12 years for depersonalisation disorder to be correctly diagnosed. In the meantime, people may undergo (unsuccessful) treatments for depression or anxiety, or have their symptoms dismissed as being "just" part of a different disorder they may also have.
Many get passed between services as clinicians struggle to understand how they can help. Many get discharged without support. Others have told me that they simply give up talking about the problem because they have learned it doesn't get them anywhere.
Professionals aren't to blame for this. After all, you don't know what you don't know. And, in fact, with increasing discussions about dissociative symptoms on social media , many mental health professionals are realising they have a blind spot and are seeking advice, training and resources. Unreal, the UK charity for Depersonalisation Disorder, received multiple requests for organisation-wide training in the first week of introducing a "request a talk" button on its website .
Researchers are doing their part, too. From producing a referral "cheat sheet" infographic , to uncovering any crossed wires in the communication between young people and NHS professionals, and delving into the physical brain to better understand the disorder - a flurry of work is in progress. Not least, the efforts to develop and improve a tailored talking therapy .
So when I look over at Callum, bowed in his seat, I have a deep empathy with his feeling that the world doesn't understand what he is going through. But I also hold a very real kernel of hope that things will look brighter for him very soon.
Emma Černis runs the Midlands Dissociation & Depersonalisation Centre. She has previously received funding from the Wellcome Trust on the topics of dissociation and depersonalisation.
