Emily's Story: Coming To Terms With DPDR

*Trigger warning: mentions mental health and struggles with DPDR*

My name is Emily, I am 29 years old and I have Sensory Processing Disorder and I am Autistic. I live in the UK and have always struggled with my mental health since my early teens. I had never experienced dissociation until September 2020. I described it as having had ‘a flash’ of it (a 'flash’ meaning a feeling which last just a few seconds). I hadn't had any sort of specific trauma or life events happening around the time that I could relate it to, and it really felt like it suddenly came out of nowhere. I continued to have brief moments where I’d dissociate for a few seconds. I would look at my arms in front of me and not feel connected to them whatsoever. I was initially quite freaked out by the randomness of these moments but they then became more frequent and started to not seem so new.

It kept happening when I was brushing my teeth, and initially I couldn't really work out why. It was like looking at my limbs and I just wasn’t in control of them at all - yet they were still functioning and doing normal actions, which was really weird. I almost wanted to keep slapping my forehead to feel more ‘present’, as if I’d zoned out briefly. I slowly realised that just the action of looking down at myself to clean my teeth, wash, get dressed, etc, was actually setting off the dissociation. This also began to impact my work as a graphic designer and illustrator, as I found I couldn't manage looking at my hands in front of me (as things like drawing and typing felt horrible) and this extended to other daily things like cooking, cleaning, etc.

My dissociation then ramped up and it began to happen more frequently and for longer amounts of time, which was worrying and quite scary. One example was driving. I’d have hands on the wheel in front of me (obviously!) but I wouldn’t feel like they were mine. It was really odd. It felt like I was sat inside my brain like a visitor, but I was looking at myself doing all these things but not really being there. I wasn’t there in the moment experiencing things. I was obviously driving but I couldn’t feel it at all. I came to terms with how I was now experiencing symptoms of both depersonalisation and derealisation.

In October 2022, my dissociation was now an everyday occurrence, which could last for hours at a time and often all day. I felt totally like I was on auto-pilot mode, and it was particularly bad in the afternoons and evenings. I'd go out of my front door and the feeling of it was 'there' immediately, which means I tried (an still continue) to avoid going outside. I don't feel real when I am walking out and about - it's almost like I am in a separate bubble. I kept feeling this disconnect from myself and my body. It continues to happen when I’m driving. I can get from A to B absolutely fine but I don’t feel like I experience the journey – the bits in between the start and end of my trips.

I decided to contact my GP surgery for advice and spoke to their designated mental health practitioner in December 2022. I explained about my DPDR symptoms and how they have progressed over the past two years. I also mentioned about there being more specialist London-based clinics but she said that she had to be able to prove that I couldn’t be helped locally first before even attempting to refer me elsewhere. As a result I was referred to my local CMHT team at the start of February 2023, but they so far haven't been able to help me or suggest anything that could help me. Luckily, having come across Unreal's work I was able to sign up for their support group and for the first time I was able to (virtually) meet a lovely group of people who also experienced the same things as me - and it felt like a huge relief.

I still don’t feel present or like I am really experiencing things 'live' or as they are happening. This can be quite unsettling and it’s so hard to actually sum up what I am experiencing because I can’t liken the experience to anything else. I know that I am in control of my body and it’s mine but in those moments it really really doesn’t feel like my limbs belong to me in the slightest. It feels like I am watching somebody else living my life to the extent that now my voice also seems really separate from myself - and it's ramped up further in that I catch myself talking and think 'Is that me? Am I talking right now?'. In June 2023 I was struggling particularly bad and tried to find a professional who I could talk to. I luckily managed to find someone with the right background and I have been paying to see them privately on a weekly basis. I still experience dissociation 90% of my day but I am working hard to understand what makes it worse and also what helps to make it a little bit better. 

My own experience has made me realise that the work Unreal is doing is really crucial to those that struggle with DPDR. I had never heard of dissociation, derealisation or depersonalisation before I experienced them for myself and I turned to the internet and luckily found answers. Unfortunately DPDR is widely misunderstood across medical and mental health services in the UK, yet alone internationally. Unreal is helping to bring awareness to DPDR through research studies, hosting peer support groups with fab volunteers and providing information for parents, carers, friends and healthcare professionals on how best to support those with DPDR.

Emily
Graphic Designer & Illustrator, UK.