What It’s Like to Dream Whilst Being Awake: An Introduction to Life with Depersonalisation-Derealisation

Hi there. It’s been a while I last posted, and that’s mostly due to being busy at university and having an up-and-down time with my mental health – so, this article is a little different to what I usually post on here, but as a way of showing that this blog is not dead, and as a way of raising awareness of this particular mental illness that I have, I thought I’d do a wee post of an essay I wrote for a creative writing assessment this year. Enjoy! 

Let’s say you’re having a birthday meal with your family. You just turned eighteen. You got dumped the week before. You’re in a restaurant by the sea, it’s your home, you’re with people that love you. You’re in the middle of exam season. Your stress acne decided to turn cystic in the run-up to your eighteenth. You got a cool new phone for your birthday, books, a vinyl. You’re not sure any of it’s real though. After all, you might not be real. You’re not quite sure anything’s been real since you were fourteen, when all of this started, when the doctors thought this was epilepsy and sent you for an EEG at the hospital.

(Side note: it’s not epilepsy.)

Let’s fast forward several months, to nearly a year later. It’s been a week since you were dumped (again). You’re at university now, in a doctor’s office. You haven’t felt like you weren’t real for a while now, but then the week before happened and it’s come back again. You tell the doctor you feel like you’re dreaming all the time. You tell them you get memories of reality and memories of dreams mixed up together and you can’t tell which is which anymore. You tell them because you’re always dreaming you can’t get out of bed. They say it sounds like derealisation. Your suspicions have been confirmed.

These suspicions were set off around the time when musician and internet personality Dodie Clark started posting videos to YouTube describing sensations she had of drunkenness and extreme lethargy and explaining visits to doctors where they would be completely stumped at the symptoms she was describing. Such sensations began to occur after a period of high-stress and trauma in her life that happened when she was seventeen. But, whilst similarities were present, the differences stood out more, meaning the connection I made between what I was experiencing to what Dodie labelled at the time as depersonalisation (later having it formally diagnosed as depersonalisation-derealisation) wasn’t fully made – but it wasn’t ignored completely.

After I’d finally gotten a diagnosis of depersonalisation-derealisation four years after first experiencing its symptoms, Dodie’s videos became my main source of information for learning about my unusual mental illness; the similarities between our experiences with the dissociative disorder helped me connect the dots between what might have initially caused my illness, what worsened it, and how to cope with it, more so than most discussions I’ve had with counsellors in the past eighteen months. I now have words to explain to those around me why I can’t get to lectures some days, or why I have to stop walking for a moment to regain balance, or why I can’t always remember the recent memories they try to recall with me.

 

Exploring the similarities between Dodie and me

We’re going to go back in time a bit here – a throwback to when I was 14 and Dodie was 17. Our derealisation symptoms start to become noticeable. She describes it as “an uncomfortable sense of floating, not taking in as much as I used to, not being able to see properly, my memory being really bad, just like I was dreaming”. Dreaming! That was the key word in this video (a later one on her condition she uploaded in 2017). When dreaming, the world around you moves at a pace that’s both too slow and too fast, with lighting that’s too dark and too bright, your brain sees everything as fuzzy caricatures of the things you know from the real world. This is living life when in a derealisation state – also known as ‘spacing out’. As a result of spacing out, what’s real and what’s a dream starts to become squished together in your brain, so memories from your life tend to fall out of your head, and you end up trying to put together a puzzle of your childhood with lots of the pieces missing. Unsurprisingly, the puzzle is left incomplete, so you end up with a fair bit of memory loss. Dodie mentions she initially thought it was just “part of growing up”. When I mentioned it to my parents at the time, they assumed it was a symptom of strange adolescent changes in my body. In reality, it was my body’s way of coping with the stress of the environment around me – it was saying a big no to exam stress, cystic acne, and troubles in the past I was now coming to terms with.

At the time, as Dodie describes, I thought I was suffering with anxiety and depression, which I continued to assume for the next two years. The dreaming sensation wore off after a while, and as I entered my first relationship at sixteen I began to feel present again, except when I was at parties. Though the noise and crowds of people I was around when at house parties were less dream-like, and more like I was underwater, or in a film watching everything around me but not actually being part of it. Because it wasn’t quite the same sensation, I jumped the conclusion that it was social anxiety and received treatment for that. But, at the same time, I had this fear of no longer knowing who I was – perhaps it was a typical adolescent identity crisis?

Not quite. This was actually depersonalisation beginning to rear its ugly head, not dissimilar to how Dodie describes it in her book:

“It’s your turn in the loo queue at a party. You stumble in, clearly intoxicated, and try to lock the door with numb hands. Your face is buzzing and you giggle to yourself as you turn around and slam your hands on the basin, staring at someone in the mirror. They have scary eyes and a red mouth that is curved upwards, creating wrinkles that sink around the smile. You comb your hands through your hair and they copy, so you make a face and their nose crinkles up, their eyebrows furrow, and their eyes become blacker. Panic creeps up your chest as your mind struggles to compute the familiar stranger in the glass”.

I’ve had this same experience looking in the mirror. It’s kind of like that bit in Mulan when she looks into the river singing about how she doesn’t recognise herself, but less musical and Disney and more just plain shit.

 

Establishing the facts of DPDR

All of this being said, there are some clear differentiations in the way mine and Dodie’s depersonalisation-derealisation (DPDR) manifests. She mentions having obsessive thinking patterns that centre around trying hard to be more present; mine are triggered by situations that lower my self-esteem. She mentions trying to ground herself by scratching her arms or fiddling with rough or sharp objects; whilst I too scratch myself, I also write, paint and draw as a way of grounding back to reality.

This is just another depiction of the unique ways the same mental illness can show itself in different people, so another big help in solving the mystery of ‘the thing that causes me to dream whilst I’m awake’ were the videos made by licensed therapist and YouTube content creator, Kati Morton. Understanding what the basic outline of exactly what DPDR is was another line in the connect-the-dots pattern of my mental illness and Kati’s videos offer an in-depth insight into this. In a video with Dodie, Kati explains the definitions of dissociation, derealisation, and depersonalisation: “dissociation as a whole is called our brain’s parachute, it’s like, ‘I can’t deal with this, aaahh!’ and it pulls us out. And then depersonalisation is when you’re disconnected from self, derealisation is disconnection from environment”. This added up to me – when I was low on self-esteem, I would be depersonalised, and when I was unhappy about stresses in my life outside of my control, I would be in a derealisation episode. Overall, it felt like my brain was running away from an unhappy reality: “aaahh!”.

Kati goes onto explain that DPDR results from trauma a person has experienced, which isn’t always major trauma (like abuse or living in a warzone) but can be small traumas too (like witnessing an argument or being embarrassed in public) – everyone copes in different ways, and either type can cause issues post-trauma. “When we have a trauma of any kind it’s like someone takes your [memory] and they just splinter it and it shoots through all your different memories. And so our brain needs to take the time to go and pick up the little pieces and superglue it back together”.

So, say you’re spending time with friends one day and you’ve been at a mental distance throughout it because you’re dissociating. Someone acts in a way that reminds you of something bad from your past, but you can’t exactly place what it is. Suddenly you don’t want to be there anymore and despite your best efforts to not make it obvious, your friends notice you’re not well; you tell them you’re fine, because you have no idea how to explain that this current moment is reminding you of a past trauma – you don’t want to hurt them and tell them they’re doing something wrong, because they’re not. But, you have to say something, otherwise this distance will persist, and you won’t enjoy your day. You’re stuck.

 

Out of the past and into the present 

How do you stop feeling stuck and begin to move on from trauma, then? Kati lists medication, TMS, and different types of trauma-based therapy as treatments that can help.

SSRIs (selective serotonin reuptake inhibitors) might be prescribed to level-out the lows of depression and highs of anxiety that can come with DPDR by increasing serotonin levels in the brain – however, reviews are mixed on how well these work as dosage and the type of SSRI prescribed can have a significantly negative impact if even a little bit wrong. An example of a side effect might be ‘blunting’, when the dosage is too high, and you don’t have any highs or lows in mood anymore, just a constant flatness. As you can imagine, this isn’t ideal – you want to be able to feel something.

TMS (transcranial magnetic stimulation) is when magnetic pulsations are used to stimulate areas of the brain that may have decreased activity due to DPDR. This is done via an electromagnetic coil placed against the scalp. Lack of research into the disorder means that the success rate of TMS as a treatment for it is far lower than it is for depression and anxiety – nothing quite raises your hopes like knowing experts are just as confused as you are by your illness.

Trauma-based therapy might come in the form of EMDR (eye movement desensitisation and reprocessing), talk therapy, somatic experiencing, and schema therapy. Each one has its own methods of teaching a patient with DPDR how to ground themselves and face their trauma so they can properly process it. Kati describes this as learning how to “flex the resiliency muscle”; essentially, a person has to come out of their dissociated state long enough to be able to reexperience their trauma and then process it head-on. Unfortunately, the problem with these is that someone who is constantly spaced-out can’t always engage for long enough during sessions in order to reprocess – once again, played against by your own mental illness.

Absolutely cracking.

Experiences with confused doctors, unsuccessful treatments and misunderstanding therapists can make DPDR appear as an impossible nut to crack. All sardonic sarcasm aside, though, there’s never no hope left, which, when in a dissociative episode for weeks on end, can seem like an impossible statement to believe. But it is always possible to get better. From seeing Dodie talk so openly about her mental illness, I now know that there are more options out there to try, even if I’m trying them for years on end. Eventually, I’ll wake up from the supposedly never-ending dream and be able to sit at a birthday meal and enjoy the company of everyone around me.

Maybe I’ll have woken up and it turns out I’ve had a toilet dream and wet the bed. But at least I would’ve finally woken up.

Published by rachel gambling

20-year-old english literature and creative writing student writer and radio show host of peek show on RAW mixcloud.com/peekshow/ radio.warwick.ac.uk/

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