Since 2008, I have lived with a chronic psychological condition called Depersonalisation and Derealisation Disorder (DPDR).

DPDR is notoriously difficult to describe in ways that accurately convey what it is like to go through, so people who experience it are usually very reliant on metaphors to communicate the feelings. Essentially, DPDR is something of a dreamlike state, where our selves and the world around us feel very hazy and unreal. Believed by psychologists to be a protective reflex of the mind stemming from the fight/flight response, it’s very common to hear people saying, ‘It’s like I’m stuck on autopilot/a robot’; ‘I feel drunk all the time,’ ‘It’s as if I’m behind a pane of glass/am in an invisible fog’, and, ‘It’s like I’m not really here’. Despite all of this, people living with DPDR usually appear outwardly “normal” with few visible symptoms - it’s definitely something of an invisible illness, but one that can have a huge impact on a person’s life.

There is a massive lack of awareness around DPDR, both in general society but also within medical circles - and as a result, the average diagnosis period is currently 7-12 years (it was 10 for me). But this being the case is always something of a mystery, as DPDR is far from a rare condition - 1-2% of the general adult population live with chronic symptoms; with up to 70% of people encountering them transiently during difficult, stressful, trapping or overwhelming points of their life. If you’ve ever been unlucky enough to be in a car accident, or have received a phone call saying that somebody close to you has passed away suddenly, you might have noticed yourself feeling numb; as if it was all a bad dream; and acting robotically to navigate the difficult situation. This is DPDR, but serving its purpose. When the mechanism becomes trigger-happy, or stuck, it can progress into being a disorder.

After being on this painful journey for a decade, once I was formally diagnosed I wanted to become more involved in raising awareness of DPDR, as well as helping to change the landscape of the condition for others. This led to me becoming a trustee of UK-based DPDR charity Unreal when it was formally registered in November 2019. I now run its Peer Support programme, as well has handling much of the behind-the-scenes admin and giving talks on DPDR on behalf of the organisation. We have leading DPDR medical experts Prof. Anthony David and Dr. Elaine Hunter as ambassadors, as well as prominent musicians Will Young and dodie.

I’ve given talks on the condition at international conferences and to psychology students all over the UK, have written a book for others living with the condition (more on this below), and regularly advise on university-led studies to give a lived experience perspective on the academic investigations into the mechanisms of DPDR and development of future interventions. Whilst historically neglected by academia, more and more researchers are now starting to take it as a point of interest.

To help with the problems so many of us face accurately describing the experience of DPDR, back in the summer of 2018 I put together a short film of visual and spoken metaphors, designed for people to be able to send to their families and friends to help the conversations around how they experience the world. Entitled UNREAL: Life With Depersonalisation Disorder, the video has since been adopted by several mental health charities and shared widely online.