Life ‘unplugged’ with Depersonalisation Disorder

Having lived with this under-recognised condition solidly for 13 years, Joe Perkins recently released his book Life On Autopilot: A Guide To Living With Depersonalization Disorder (Jessica Kingsley Publishers) to raise awareness and provide valuable information to fellow sufferers and clinicians alike. Joe discusses how his life has been impacted and why he thinks the book is necessary, with Assistant Professor of Clinical Psychology at the University of Birmingham, Dr Emma Černis.

 

For readers who may not have come across depersonalisation before, how would you describe the experience of Depersonalisation Disorder (DPD)?

Intense disconnection. I know that’s vague, but DPD does impact all areas of my life and that sense of ‘being unplugged’ is the overriding theme. My experiences are almost wholly ‘intellectual’ rather than felt, if that makes sense. I know I’m driving a car; I know where I’m going; and I know my reactions are fine. Yet, I feel like I’m not controlling the vehicle; and I arrive at my destination feeling like I’ve given no conscious input along the way, even though I understand that can’t be true. My ‘reality testing’ is intact – DPD isn’t a disorder of belief – but life really does feel, as per the book title, as if somebody has pressed my autopilot button and I’m robotically following a series of pre-programmed commands.

Depersonalisation is also such a difficult thing to enunciate in ways other people can understand, so we find ourselves reliant on metaphors. It’s common to hear descriptions such as, ‘It’s like I’m drunk all the time’, ‘It feels as if I’m trapped in a dream’, or, ‘It’s as though I’m behind a pane of glass’. But, as you highlighted when we spoke for my book, difficulties with language can be a barrier that stops people from seeking help and creates misinterpretations on a clinical level.

That was certainly a key theme in the research interviews I had with people who had experienced dissociation in the context of psychosis during my PhD. The interviewees also spoke about the wide-ranging ways dissociative experiences can impact their day-to-day life – what has been the impact of depersonalisation on you?

It wrecks my motivation for everything. Simply put, nothing feels real enough to warrant caring about, even though I logically know it should be. It really does worm its way into all areas – I find myself feeling so empty-headed and permanently exhausted nowadays that the only ‘jobs’ I’m able to do are ones I can fit around my limitations. I do work hard demoing guitar gear for manufacturers on YouTube, but some days I simply can’t function, so the studio has to stay silent.

Romantic relationships are also a minefield. This is an angle that the media often latches onto as it makes for a catchy headline, but: I’m simply unable to feel love for my partner. That’s the honest truth of it. Fortunately, she’s incredibly understanding of how life is for me and works with me to accommodate my shortcomings, but you can see how that can cause major problems – and that’s just one aspect of the condition. There’s plenty more that throw a spanner in the works too.

That sounds incredibly difficult. So, when did this all start? And how did you come to write a book about it?

It was back in 2008 during my A-levels. For me, school was a high-pressured academic environment, and I also had a very rough time there with bullying, so I was permanently stressed, never had any confidence or self-esteem, and was always looking over my shoulder. I think everything came to a head that year and I began to feel a bit ‘hazy’. It was minor at first and I thought I just needed sleep. But the haziness intensified as the months went on – and has done ever since, I suppose. No medical professional could give me any answers back then either, which was horrible. But after many years of it taking over my life, I had a bit of a lightbulb moment in 2016 when I found an online Guardian newspaper article about DPD. Everything suddenly made a lot more sense.

The main catalyst for writing the book was after I made a short film about DPD in 2018, and people wrote to me saying they’d experienced it for years but were only then being able to identify what it was. That made me realise just how many others are still out there searching for their own lightbulb moments. Professional opinions on DPD can and do vary, and I’d also recently become involved with Unreal (a new UK charity specifically for depersonalisation) so I was speaking with a good number of experts already in that capacity. It seemed logical to extrapolate that, collate the information and academic research out there into one place, and team it with real-world advice from others with actual experience of DPD rather than ‘just’ those who have studied it from afar. But it was also important to keep the clinical sections accessible for people like me, who might struggle with their concentration and likely aren’t medically trained – academic papers can be challenging to pick your way through when you don’t live in that world.

True! And having read the book, I can vouch for it being very accessible as well as informative. Can you tell us one of the professional opinions about depersonalisation you cover in Life on Autopilot?

The protective reflex of the mind concept. Dr Elaine Hunter explained to me that ‘overwhelmed’ and ‘trapped’ seem to be the combination of feelings that most commonly trigger the depersonalisation response; and emotional difficulties in childhood are prevalent for a majority of those with DPD… I fit that model like a glove! DPD can be triggered by drug use too – cannabis in particular – which I’ll admit I did have a one-off experience with around that time too. From what I’ve been able to find out, the drug probably wasn’t a factor in my case, but it certainly is for many others, especially when a panic attack is involved. That also ties in with the protective reflex idea – our mind dissociating to protect us from the panic, and if we’re already mentally overloaded, that can ‘tip us over the edge’, so to speak – making it a common trigger.

Was there anything that surprised you when you were gathering professional opinions about DPD?

I knew it from personal experience already – but the lack of awareness and guidance. Given that DPD is so common (1-2 per cent of the adult population – on a par with schizophrenia or OCD) I don’t understand 

why it’s not something there’s NICE guidance for. If you compare NHS awareness and clinical provisions for those conditions to DPD, you’d assume DPD must be super-rare. Even since I’ve had it formally diagnosed, so few clinicians I’ve spoken to have even heard of the word ‘depersonalisation’, let alone known how they might be able to help. I remember you saying to me that in your clinical psychology training there was barely a mention of dissociation, let alone depersonalisation more specifically – that seems to be the common training experience amongst mental health professionals.

Have you seen any real-world impact of this lack of awareness and training?

So many people I’ve spoken to have been misdiagnosed: their DPD has been put down as everything from psychosis to food allergies. I do think another issue is that the experience of depersonalisation can skew the results of some diagnostic tools commonly used in mental health services, and without awareness of that, there could be a problem. For example, I score very highly on the PHQ-9 (depression scale), but this is because items like ‘having little interest or pleasure in doing things’ are equally applicable to DPD as to depression. Whilst there are commonalities, they are different conditions. I do experience low mood, but not to the level you’d expect from my PHQ-9 score. Without asking about depersonalisation experiences, clinicians can take higher scores as a watertight indicator of depression and then won’t (or can’t) give treatment for anything other than depression. 

But, the most difficult appointments continue to be when it’s all trivialised. Clinicians have told me to, ‘take a nice hot bath,’ and ‘try thinking about happy things with a cup of tea’ rather than trying to understand what I’m experiencing. Those instances always leave me feeling very disheartened – it’s difficult enough to ‘just ask for help’ sometimes, and whenever I’m treated like a timewaster, it makes me want to never try again.

That sounds incredibly frustrating. What has your experience been of treatment for DPD?

So far, nothing has been able to relieve my symptoms or stop them from worsening – which can unfortunately happen. That said, the best treatments have probably been various forms of CBT, as even though they haven’t touched the depersonalisation, I have learned a good amount about myself and other people in my life. I think therapies can be great for understanding your own psychology, and recognising that problematic characters are often just poorly managing their own issues with themselves rather than their actions really being anything to do with you. The least useful thing was probably Naltrexone (a medication to aid withdrawal from alcohol and opioids, with limited trials of its ability to counteract the ‘emotional blunting’ of DPD). I did push hard to be allowed to trial it, to be fair, but it just made me feel like hell and damaged my liver. All the meds I’ve tried have done nothing for me.

I’m glad you found some benefit from CBT sessions. What would your advice be to a psychologist working with someone with DPD?

I think it’s important to recognise the complex and variable nature of depersonalisation. As a psychological response it’s fundamentally reactionary – so the concept of ‘recovery’ hinges on working with the patient to identify what’s keeping it going for them, and challenging their individual struggles. There can’t be one single blanket approach that works for everybody, because the multitude of things our minds might try to protect us from can be so different. That said, I don’t think it should be something that bruises professional pride for a clinician to acknowledge they don’t know enough about a condition and pass their patient on to somebody more knowledgeable in that field – in fact, it should be actively encouraged rather than being a reluctant last resort.

You mentioned your work with the Unreal charity. Is that a resource clinicians can use to better understand depersonalisation? What does Unreal do?

Definitely – our website is full of information all about the condition, and we’re always happy to answer any questions; as am I if you contact me directly. We’re a charity of volunteers, and whilst we do have leading medical experts in the field involved (like Dr Elaine Hunter and Professor Anthony David), we’re largely people with lived experience – so our primary focus is on supporting others, signposting them to relevant resources, pushing for policy change, and creating a sense of community. We used to run peer support sessions in London, and when Covid put a stop to those we moved them online – which in a way works better, as we’ve had people joining us from all over the world. Many who attend have spent years – decades, even – thinking they’re the only ones experiencing this, and suddenly they’re on a Zoom call with 20 others all going through the same struggles, which can be quite overwhelming. Those virtual sessions have been so popular we’re now recruiting new facilitators to expand the program. The charity is also involved with a new two-year NIHR-funded study by UCL researchers, investigating specialised CBT for DPD. So, we’re always doing our best to push the cause forwards in whatever ways we can!

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