The mental health condition that makes you feel detached from reality
You've likely not heard of depersonalisation and derealisation is, but the truth is most of us will experience both in our lives. Often described as feeling like you're disconnected from your body and the world around you, this usually happens after a shocking or traumatic event. Some people liken it to feeling like you're a robot, or having an out of body experience. For most, these feelings pass. But for some, they can last much longer, be incredibly frightening, and seriously impact your mental health and quality of life.
Musician dodie, who started out on YouTube, has been experiencing feelings of derealisation since she was a teenager. In a video which has now been viewed 1.8million times, dodie, now 24, told her subscribers she has "a mental health condition that makes me feeling I'm dreaming all the time."
Depersonalisation and derealisation disorder (DPRD) is a condition that affects 2% of the population (around 1.3 million people in the UK), yet it is still widely misunderstood. What we do know, the condition is a defence mechanism the mind employs to help it to cope with too much stress. The condition - and lack of awareness around it - has even been raised in parliament by MPs. So why have so many of us never even heard of it?
dodie, who is now an ambassador for DPRD charity Unreal, spoke to Cosmopolitan UK about what it's like to live with depersonalisation and derealisation disorder, how to spot the signs of DPRD and what treatments she's been tried in order to cope with this chronic condition.
I was about 18 and there was a lot going on in my life, and a lot of family things. I also started YouTube, and I felt like my life kind of went off the rails. I just started feeling very spacey, almost like I was asleep. I got my eyes tested a few times because it felt like I was losing my vision, like I couldn't quite see enough. I thought maybe this is just what happens when you turn 18, and that people glorified childhood because everything was so much more vivid.
A post shared by dodie (@doddleoddle) on Dec 24, 2019 at 3:06pm PST
It's hard to explain, but if you've ever felt shock, and that spacey feeling that comes after it when you're very overwhelmed that you can't quite focus on something, it's like that. It was like I was living my life at 40%. Almost as if there was a line between living and dying, and I was somewhere in the middle.
I remember asking people if they ever felt like they were dreaming. They'd all tell me they didn't, but reassured me it would go away. 'Just give it a few weeks, try not to think about it,' they'd say. And since then, I honestly just haven't felt the same again.
I carried this with me and became very depressed. For a few years, I felt like I wasn't taking anything in, and was forgetting things. I was always trying to open my eyes wider to take the world in. I would grip my arms and legs, to try and feel normal. There were so many nights where I'd lie awake, depressed, and think about how my life used to feel.
Diagnosing DPRD
I went to the doctor and had written a giant paragraph on my phone explaining how I was feeling. I read it out to her with tears in my eyes, and she asked me what was going on in my life. When I told her I was travelling, writing and working, she shook her head and said it would be dangerous to diagnose someone so young with depression because clearly I was busy and functioning.
Then, a few years later in 2016, I reached a breaking point in. I got so angry and depressed I couldn't take it anymore. I was so confused and frustrated for so long, and felt like I was going mad. I did some research and found a lot of people who experienced the same symptoms. They suggested it was dissociation, depersonalisation or derealisation. I thought, 'This relates to me.' It was really helpful to find those name so I could try and get a diagnosis.
After a year and a half spent on an NHS waiting list, I got my diagnosis. By this point I'd had it for five years already.
Treatment for DPRD
First I was put on the anti-depressant Sertraline, but it didn't help with my depression. I didn't really enjoy how it felt because it stabilised my moods, and I'd always felt almost grateful for my ups and downs. They made me feel more connected and in touch with my emotions.
Next I was referred for cognitive behavioural therapy [CBT], but they couldn't really find something to work on and said the waiting lists were really long. I sought my own private treatment and started working on my depression with a therapist.
A post shared by dodie (@doddleoddle) on Dec 27, 2019 at 8:42am PST
I also tried transcranial magnetic stimulation [TMS], which is essentially where they send a pulse to different parts of your brain that might increase blood flow. That didn't really work for my derealisation. I tried hypnotherapy, a bit of eye movement desensitisation and reprocessing [EMDR], but because I was very spacey and I couldn't focus.
Coping with depersonalisation and derealisation
Fortunately, I've found coping mechanisms that have really helped. As the condition can make you feel very 'out your body' and unable to connect with yourself, I find myself being fidgety, scratching my arms, or playing with something when I'm subconsciously trying to ground myself.
But, I've learned some special techniques including one called'5,4,3,2,1', which helps when I'm feeling particularly spacey.
It's a fun mindfulness technique where you list five things you can see, four things you can hear, three things you can touch, two things you can smell and one you can taste. Immediately you feel like a little bit more like you're back in the room. While I've never get full relief from this, it's a good way to feel a little more stable.
Moving forward
I'm seeing another therapist now, and have accepted that I might feel like this forever - and that's really helped me. When I was very depressed, I was holding on to the idea that I couldn't be okay with this forever. As soon as I let that idea go and accepted this is just the way I am now and how I experience things, I felt a lot better. Ironically, it's helped me cope.
Now, I encourage anyone going through depersonalisation or derealisation to think positively. It can be really hard to look for the good and to really lock that mindset into your brain, but it's a really good thing to practice.
A year ago when I saw MPs were talking about it in the House of Commons, I burst into tears. It was amazing to see. It suddenly felt so real, like there were really people are talking about it finally. Now, I just want to raise awareness and help other people so that we can all get the treatment and support we need.
What you need to know about depersonalisation and derealisation disorder
"Depersonalisation can be described in many different ways but essentially it is a feeling of being disconnected from your own body (depersonalisation) or feeling disconnected from the world around you (derealisation)," says Dr Elaine Hunter, a consultant clinical psychologist with over 20 years’ experience of treating depersonalisation and derealisation. Dr Hunter is also a founding member of Unreal.
What does DPRD feel like?
Dr Hunter explains, "People experiencing Depersonalisation and Derealisation may report the following symptoms:
Feeling like a ‘robot’
Feeling that you're not in control of your speech or movements
Feeling like you are ‘outside’ of your body or parts of your body
Emotional or physical ‘numbness’
Feeling as if you are living in a dream or a movie
Feeling as though you are ‘in a bubble’ or ‘behind glass’
Feelings of being alienated from or unfamiliar with your surroundings
Your surroundings appear distorted, blurry, two-dimensional or artificial, or alternatively, heightened awareness and clarity of your surroundings
Distortions in your perception of time
As Dr Hunter points out, everyone will experience these symptoms differently, and they are incredibly hard to describe. "If you don’t recognise your symptoms in the above list, that doesn’t mean that you aren’t experiencing it," she adds.
What causes DPRD?
"Many people find they feel symptoms of depersonalisation as a protective mechanism against traumatic events or bereavements, the emotional toll can be too much and therefore depersonalisation acts as an ‘emotional brake’," an AnxietyUK spokesperson says.
"This experience can be heightened and prolonged for those who have anxiety and therefore it becomes a more alarming symptom; especially as it is, understandably, a very frightening experience for many. It is also known that stress from external events can increase feelings of depersonalisation."
It may also be associated with another condition such as anxiety, panic disorder, depression, PTSD or OCD.
What to do if you're experiencing DPRD
You don’t have to be in crisis to access mental health support. You can call the Rethink advice and information line Monday to Friday, 10am-2pm for practical advice.
Anxiety UK also has a national helpline that offers support and advice for a range of anxiety conditions, including depersonalisation and derealisation. Their trained volunteers can give guidance and options of support on 03444 775 774.
You can also call the Mind info line on 0300 123 3393 or email info@mind.org.uk.
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