Depersonalisation-derealisation disorder (DPD or DPRD) chronically affects around 1 to 2.4 per cent of the UK population. Common in those who suffered childhood trauma, DPRD is the persistent feeling of separation from the self, or the sense that nothing is real. The percentage of sufferers is similar to those diagnosed with conditions such as schizophrenia and obsessive compulsive disorder (OCD), and yet, hardly anyone has heard of it.
There are a few reasons for this. Dr Emma Cernis, Assistant Professor in Clinical Psychology at Birmingham University, says that it’s because of “two halves of silence.” The first half refers to the fact that, at a clinical level, the research simply isn’t being done. Currently, there’s no medication licensed for the condition and general practitioners (GPs) often meet sufferers with a blank stare.
The other half Dr Cernis is referring to are the sufferers themselves. With a condition that feels so alien, it’s often hard to summon the right kind of language to discuss how you’re feeling, and you’re also worried that if you do, those on the receiving end may think that you’ve truly lost your mind.
I certainly didn’t have the words to describe it when it first happened to me. I was sitting with my partner during lockdown, sick of the Marvel multiverse marathon that we’d previously embarked on. Instead, he managed to cajole me into watching the horror movie Saint Maud.
As I watched the central character careen around the screen, her drunken episodes causing her carefully-constrained life to unravel, I felt as though I was watching her mirror feelings I was slowly being overwhelmed by in my own life. Stumbling into the bathroom, dark spots obscuring my vision, reality seemed to ebb away, until I felt as though I was trapped right alongside Maud. The way that she was kept from the real world, trapped behind a TV screen, was how I began to feel—stuck behind glass, unable to reach through, and connect with my loved ones and the world around me.
This feeling is common for sufferers of DPRD. The British Medical Journal describes the condition as the “as if” disorder due to sufferers’ reliance on metaphor to describe what they’re feeling. Phrases such as “I feel permanently drunk”, “I feel as though my feelings aren’t my own,” and “I feel as though my life is a film” are some of the most common ways people try to express themselves.
Fast forward two years, my DPRD is in remission and I’m living in Madrid. Due largely to the surrounding hype and a lack of research on my part, my mum and I decided to go and watch Don’t Worry Darling at the cinema. Seeing Florence Pugh battle with conflicting realities, albeit magnificently dressed, I was transported back to my lockdown sofa.
My feelings of unreality took a long time to recede, not helped by the fact that the handle to the cinema door actually came off in my hand when I desperately attempted to exit, further blurring the line between fiction and real life. Walking almost drunkenly through the busy streets, my flat became a beacon of refuge, with the unnaturally fast yet reassuring chatter of Gilmore Girls its perpetual soundtrack.
Over the next couple of days, my feelings receded but my apprehension of watching anything remotely challenging remained. In an attempt to not be stuck watching New Girl and The Office for the rest of my life, I decided to explore why I was finding certain cinema and TV so triggering.
Evelyn Dilkes, a PhD candidate at Essex University and a fellow sufferer from DPRD, is currently studying the condition. She’s quantitatively analysed 400 Reddit posts and an online hub sacred to DPD sufferers due to the absence of community felt in the medical sphere. Through this research, Dilkes has found that one of the largest triggers to people relapsing into a depersonalisation state is in fact, film.
“The simple act of watching a film can remind people of a time when they felt like they were in a film. And that reminder could trigger someone back into this state,” she explained to me over a voice note.
But there are other connective reasons too, Dilkes added. “Spending too much time at a screen is another big reason people can feel depersonalised. Sensory overload can also lead people to feel this way. In the cinema, lights are low, there’s also bright colours and loud speakers. That’s a lot of stimuli and can be too much for someone with DPRD.”
The expert also delved into how she’s personally felt very triggered by watching films in the past. “I would be watching beloved characters and feel no emotional connection to them. It almost feels like what I imagine Alzheimer’s or dementia to feel like—as if you’re forgetting people that you know.”
“People with DPRD also often spend a lot of time thinking philosophically or existentially,” Dilkes continued. “Watching a film can present them with further various existential questions, for example, human behaviour.”
However, it doesn’t always have to be this way: “I now use TV and film as a crutch. While I don’t think I’ll be watching Black Mirror anytime soon, when I start to feel overwhelmed I put on It’s Always Sunny in Philadelphia. These kinds of things make me feel safe.”
When I spoke to Joe Perkins, a chronic DPRD sufferer for over 15 years, and a trustee of DPD charity Unreal, he shared that he also finds using the film metaphor helpful when explaining his condition. “When watching a film, you’re seeing things that you don’t necessarily personally feel connected to, and that’s very similar to how I would see the world. It’s like when you’re having your own romantic relationship, it’s almost as though you’re watching one in a film. DPRD manages to blur the boundaries between viewing and feeling,” Perkins stated.
It’s this extremely intense combination that means that Perkins, like so many of us, can’t really enjoy films. The trustee, however, went on to reiterate: “I can’t really watch films in general, focusing on anything for any length of time is challenging for me.”
That’s also why he is currently helping Unreal to create a documentary about the often dismissed or disregarded disorder. Assisting him on this project is Michael Down, a man who has been suffering from DPRD since 1985.
For Down, film is a crucial tool to try and connect to his emotions: “I’m really into horror. I’m always chasing that feeling but I never really get scared anymore. It’s the same reason I go on roller coasters—I’m looking for a bit of a thrill because I am quite divorced from emotions and reality.”
This form of media consumption does seem to have succeeded in being somewhat positive for Down. He’s featured in the documentary, as well as helping to create it, and has found the process to be therapeutic. “It’s weird to relive these past emotions. The mental health provisions when I first started experiencing symptoms were really bad—the last days of the old school asylums,” he told me, adding, “Living without a diagnosis for so long definitely took its toll. By making this documentary, we’re hoping other people don’t have to go through the same experience.”
Film is also helping the condition become more widely understood by the general public. DPRD is often incredibly difficult to put into words, and so I asked Down how he managed to transfer this feeling into a visual format.
“I’ve been doing some tests with some old Soviet lenses that I’ve got from the 50s and 60s,” he explained. “I’ve put them on my modern camera and they’ve got a mental depth of field. It’s really shallow but almost dream-like. Your nose will be in focus but your eyes will be out of focus. To me, that works really well to show that type of immersion. I’ve also been playing with a staggered ghosting effect, like a trace. That’s provided some visceral reactions in other people as well. For example, I showed Jane, who is the head of the charity, some clips and she had to leave as she found it so triggering.”
After speaking to fellow sufferers, it seems as though my future doesn’t necessarily have to be consumed by mindless rom-coms. As Dilkes previously explained, while this might be something I turn to for refuge during times of emotional vulnerability, it doesn’t mean that I have to avoid anything R-rated for the rest of my life (I just sat through, and actually enjoyed, The Banshees of Inisherin, a personal best).
And, if projects like the documentary being undertaken by Down and Perkins get off the ground, this form of media could actually be a valuable tool to further the awareness and treatment of DPRD. All of this to say, film itself might actually be the key to a non-embarrassing Netflix account.
If you Google “What is it like having cancer?” the majority of results that come up will include clinical help or media representations based on age-old stereotypes. In reality, cancer is the most cathartic mind-body interaction that I’ve ever experienced. I’m sure that’s problematic to read, but unless you’ve come up against the ‘c word’ yourself, I’d imagine your perception is slightly misconstrued.
On the one-time secular observance that was ‘Twosday’ I was hit with the ‘you have cancer’ potential death note. It was a form of leukaemia—a quickly progressive and aggressive form that required a cocktail of three chemotherapies and four five-week isolation periods. Lovely stuff.
The day I was diagnosed started off relatively tame in the grand scheme of things. My 8:45 am blood test was seldom significant to me, I had just assumed that I was suffering from a nasty case of the flu. Fast forward six hours, I was being spam-called by my general practitioner (GP). I’ll admit that I ignored the calls as I’m an inherently overly cautious gen Zer who won’t answer the phone if I don’t immediately recognise the number, but then, I was met with an email. An email from a GP? My anxiety shot through the roof.
Having just battled two years of the COVID-19 pandemic as a university student, I was no stranger to a heavily interrupted and mismanaged education. But cancer isolation completely stripped me of my social life. I was exploring a potential relationship with someone and felt as though I was at a relatively optimal time in my life, both friends and opportunities-wise.
Not only was my personality rapidly decaying, but so was my health. No one warns you about the mind-altering, self-depreciative, jaded, and utterly terrifying period you’re about to endure, only to be met with survivor’s guilt on the other side.
The treatment itself isn’t something that the media could ever exaggerate. Rather, it’s far beyond what many can comprehend. While friends partied and intoxicated their bodies with alcohol, I paralleled such poison in the form of involuntary consumption of cytotoxic drugs—which was later met with bouts of sepsis and the loss of my eyesight.
Despite being a long-term glasses wearer, nothing could’ve prepared me for the nasty wake-up call that was a loss of central peripheral vision—an issue that remained ignored for months. I could no longer read my phone screen (my one relief and saving grace through treatment) out of my left eye and was misled to believe that the sight would return.
Something that may seem forbidden to mention is that my libido almost disappeared. Unclear as to why that was, I sought an understanding of why I would be so deprived of such an innate desire. Most results stated that it was a combination of the higher doses’ side effects, yet I couldn’t help but think that I’m at the age where no sex would be the end of the world.
As the chief fly on the wall, it was almost toilsome observing my peer’s drinking habits. Whether it’s due to the insane strength of the chemo or the rapid acknowledgement that cancer is going to define and mature me, I don’t think I’ll ever drink again. The smell alone puts most off but having projectile vomited on a daily occurrence throughout my treatment, I couldn’t think of anything worse than putting more toxicant in my body.
22 was an incredibly griefful time to be diagnosed. I was mourning the life that I could’ve had and lamenting for my future all at the same time. Knowing that I’d be handing in my dissertation from the (dis)comforts of my tiny hospital room and watching my graduation via live stream, my outlook seemed pretty dire.
My life changed overnight, and not just in the medical sense. Friends, family, romances, work, studies—everything changed instantaneously. I fear that people don’t know how to act around the ‘c word’. Personally speaking, I also wouldn’t know what to do if one of my closest friends had told me they were just diagnosed with one of the most morbidly represented diseases in our history.
What leaves me bemused is the fact that one in two of us will develop cancer in our lifetime. That’s 50 per cent of the population, yet very few are consciously worried about it. Indeed, fears around the realities of cancer—prognosis, diagnosis, and treatment included—will ring true for most. However, until you reach that peak, the awareness and concern around the disease (in its multitude of forms) primarily interest those who’ve been affected by it, whether in/direct.
How much do you know about cancer? Of what you do know, how much of it is about the life-threatening side effects, the often-taboo symptoms, the treatment, and where would you start when trying to conceptualise and rationalise exactly what that person is going through? Few would have a conclusive answer, which is a wider-societal issue. Nonetheless, suppose you have been indirectly affected by cancer. In that case, you should be able to answer that question with enough clarity and reflection to account for how you responded to your experience.
Something I wished for, and currently advocate for, is the apprehension around cancer. We all rush to doctor Google in times of hypochondria, but we must look beyond the Aesculapian accounts of diseases and shift focus to a more pragmatic approach.
I refrain from accusing the current resources of being mendacious, but I’d definitely state that the representation of life with cancer is imperfect and somewhat marginalised. Even from starting my podcast and conversing with like-minded individuals, the realities of life with cancer prove to be a stark difference from that of what you can read online.
Similarly for me, I suppose expectedly, there has been a realisation around the lack of accurate discourse around life after treatment. When the wealth of your life has been shepherded by a team of medical professionals and oncology specialists, it’s almost impossible to visualise a life without around-the-clock care.
There is a range of unbelievably generous and educational charities available to us—even so, no one can prepare you for how you’re going to change. I remain bloody but unbowed, both figuratively and literally.