Mental Health Awareness Week 2020: My Experience of Depersonalisation Disorder
By: Alli Albion
Tags: Help, Mental Health, Anxiety, Anxiety Disorder, Mental Health Awareness

Okay, mental health awareness week. Here we go! This is the first time I’ve ever contributed to this and I’m doing so now, in my 32nd year on this planet, because finally I understand why it’s so important.

Anxiety and depression seem to be becoming more prevalent. I can’t tell whether it’s because my brain is currently drawn toward negativity more so that’s my perception, or whether it’s a symptom of modern life and literally as simple as more people feeling isolated, disconnected and uncertain about the world around them. Or something else. Maybe it’s all of the above. Whatever it is, it’s just not something that can be ignored.

For me, anxiety and depression have always been around. I consider myself to be someone who has had high-functioning depression most of my adult life, and anxiety that I have been able to manage — or in some cases, that I have thrived on. However, two years ago, grief turned into depression, and a traumatic experience during that depression turned into an anxiety disorder. These experiences have been the first time I’ve really, truly understood the dangers of ill mental health, the stigma that surrounds them, and the distance still to go in order to prevent them.

I’ve learnt a lot of things during the last couple of years, but one of the most important recovery aids has been hearing other people’s stories — seeing my fears and thoughts in theirs, and seeing they’d made it out the other side, triumphant and intact — something at times I thought impossible. This is why, for the first time, I’d like to publicly share my experience of an anxiety disorder called Depersonalisation & Derealisation Disorder (DPRD), with the hopes of giving others with the illness some solidarity and hope about recovery, and to raise awareness so anyone who experiences it in the future can get a diagnosis early on. Though DPRD is fairly common, it is not a well-known illness and there are millions of people who go undiagnosed.

I’m going to keep it brief for now, with the intention of writing my full story in detail at a later date, when I feel able. I’m still not out of the woods and just writing about it intensifies the symptoms, but hopefully if briefly explaining it right now could help even one person then that’s great. I’ve found hearing other people’s experiences incredibly reassuring — particularly when they managed to recover. I do believe the more people are open about it, the less isolated people feel and the quicker we are on the road to recovery. Without communication, nothing changes. Easier said than done. But, here goes…

Okay, so what is DPRD?

Well, the most crucial thing to note is that it’s anxiety… at the extreme end of the scale. In fact, just reminding myself of this has helped with my recovery. Anxiety is classed as a disorder when it affects your ability to get on with life, on a long term basis. I have been experiencing DPRD for exactly 18 months now and to say it’s been hard is an understatement. I would go as far as to say it shattered everything I knew to be certain about myself, the world and reality into a million pieces and recovery for me at the moment is slowly putting those pieces back together.

Many people will experience DPRD at some point in their life — apparently something like 70% — as it’s the brain’s natural reaction to trauma. However, most people will experience it for fleeting moments; seconds or minutes at a time and then it will go away. When you are experiencing a disorder, it persists 24/7 for weeks, months or even years.

An early 20th century German psychiatrist, Schilder, describes it as this: “To the depersonalised individual, the world appears strange, foreign, dream-like. Objects appear at times strangely diminished in size, at times flat. Sounds appear to come from a distance. The tactile characteristics of objects likewise seem strangely altered… The emotions likewise undergo marked alteration. Patients complain they are capable of experiencing neither pain nor pleasure; love and hate have perished with them. They experience a fundamental change in their personality, and the climax is reached with their complaints that they have become strangers to themselves. It is as though they were dead, lifeless, mere automatons…”

What are the symptoms?

Everyone’s symptoms differ and they’re incredibly difficult to describe. If you’ve experienced it, you’ll know what I mean. For me personally, at the worst I felt like I was stuck between life and death — like I had somehow left life and reality but had not quite died. A nightmarish scenario. In a dream I was not waking up from. Nothing felt real. I was very aware that I didn’t feel part of the world. That I did not exist. Some tv programmes or films made me feel terror. Looking in the mirror at my own face felt like I was looking at a stranger. I couldn’t understand time, or visualise what ‘tomorrow’ might be — not even in terms of events that might happen — as in, I couldn’t understand what would possibly happen after the very moment I was experiencing. Time was no longer linear. I couldn’t remember my past experiences. I lost all perspective. Adrenaline coursed through my veins 24/7. Panic. Dread. Terror. Constantly. I felt like I was a tiny person in the back of my head and everything else was taken over by something else, as if my head were full of cotton wool or in a bubble. I was convinced I had psychosis. I couldn’t concentrate, felt like my mind had gone blank, couldn’t picture my friends’ faces. I felt like a tiny astronaut in space, drifting away from earth and no one could see me. Hopeless. I felt really far away from reality, physically. I didn’t feel anchored anywhere in space or time. I felt lost. Though this is very frightening to experience, the hardest thing was that everyone around me said I was acting normally. No one could see what I was feeling. And this was the most frightening, isolating aspect. I was convinced I had gone mad. I often compare it to being in ‘the upside down’ in Stranger Things or that bit in Get Out where he falls back through his chair. Literally, terrifying… and relentless.

Recovery

Over time, luckily, these symptoms have diminished. These days, things still feel very dreamlike and I have a variety of cognitive and visual disturbances… but unlike the 100% at the start, the severity now ranges from 10% to 50%. I still struggle to engage in social situations and it takes a lot of energy to focus on work and process new information, but overall it’s improving every month. There are still days I think I will never fully recover, everything feels meaningless and hopeless… and that is the illness. Getting to where I am now has taken a massive amount of work and energy. Every. Single. Day. and these are the things that have helped me and still continue to help me:

The most important one: Support from friends and family. I have some incredible friends & family members who check in with me regularly; who understand my illness and who make allowances. I also have an incredibly compassionate, patient, encouraging and loving boyfriend who has been my number 1 champion throughout the whole thing. I am fairly certain I would not be here right now had it not been for all of these people who saw a glimmer of light when I could see none. It makes me emotional just thinking about it. Thank you all, so much. Therapy. I’ve seen three therapists throughout the last two years, and have tried counselling, CBT and hypnotherapy. I believe all have been helpful in different ways and fundamental in my recovery. Being able to talk to someone about my deepest fears and despair has lifted my depression, allowing me to work at the anxiety. Relearning how to process difficult thoughts through CBT has been massive. Definitely recommend CBT if you experience intrusive, irrational thoughts or worries often. Relaxation techniques. Incorporating meditation and yoga into my way of life has changed everything. Most of the problem stemmed from feeling as if I had no space in my head, physically. So, creating space through breathing and meditation has been huge. It took a while to master it, but now I could never go back to life before meditation. Even if you’re not experiencing an anxiety disorder, I highly recommend even 5 minutes a day if you can. A super supportive boss. After I came back to work following two months signed off, he allowed me to work three days a week for months, on full pay, and then finally four days a week indefinitely, with no reduction in salary. A monumental commitment and something that restored my faith in humanity. He continues to employ me on a freelance basis. Without his support I would have had to leave work. Surrender. I’ve only learnt this one recently. It’s taken a while. As things have slowly untangled, I have finally been able to see this one. It’s the oldest one in the book but acceptance really is the way forward. What can I do? What is in my control? You can only do what you can do. I never thought I’d write this, but… self help. Once I understood what I was dealing with, I started to seek out help. Books, podcasts, articles. I found them so helpful. I remember early on I heard Dr Caroline Leaf on Jonathan Van Ness’s podcast talking about how you can retrain your brain, and it gave me the hope I needed to keep going. Positivity is your number 1 goal in recovery. I knew that if I could surround myself with positive messages and hopeful solutions, dig deep and find a spec of hope, I had a chance to get better. Specific to DPRD, I found the book ‘Overcoming depersonalistion and feelings of unreality’, written by psychologists at The Maudsley, so helpful. Likewise The DP Manual. This guy describes DPRD like I never could. Just hits the nail on the head. I also found Unreal Charity, who have offered live chats with their team and a platform to connect with other people experiencing DPRD.

Thanks for reading and I hope this has helped in some way. If you need more information, visit Unreal: https://www.unrealuk.org/what-is-dprd

Stay safe, and take care x