Kaitlin’s Story: Obtaining a Diagnosis

Hi, I’m  Kaitlin, and I have been living with Chronic Depersonalisation and Derealisation Disorder for over 5 and a half years. I only discovered DPDR about a year and a half ago. So, for four years, I was living with it not knowing what was going on. I’m sure the majority of people experiencing DPDR have lived through that ‘not knowing’ phase and understand how scary and confusing it can be. The sad reality is that DPDR is widely experienced (1.93% of the UK population), yet not many people have even heard of it.

I had been in therapy on and off through my teenage and early adult years without getting any answers, but 18 months ago my current therapist mentioned Depersonalisation, something I had briefly heard of before, but I didn’t think that what I was experiencing was that serious.

With the help of my therapist, I started to explore DPDR and found it extremely validating and reassuring to know that I wasn’t alone in my experience and that there are people out there who understand. I think that’s one of the hardest things for me about having DPDR: it doesn’t make sense to people who haven’t experienced it, which makes opening up and talking about it difficult. My outside body experiences things, but on the inside I feel nothing; I’m not connected to my body or the world around me. Yet, I cry and laugh and smile and can be angry and upset, but I don’t feel it.

Although I was finally able to give my symptoms a name, I felt like a fraud not having an official diagnosis. I thought my family and my GP wouldn’t take me seriously or think I was making it up. So I contacted Dr Elaine Hunter at the Depersonalisation Clinic in search of some answers. I am fortunate enough that I was able to afford this luxury thanks to my savings.

After receiving an official diagnosis of Depersonalisation and Derealisation Disorder, I felt so much relief, and so much validation. I finally had an explanation. One that I could take to my GP and ask for medication without being denied and turned away.

I then felt I was able to open up to those around me. Despite having an incredibly loving and supportive family, the thought of sitting down and having the conversation was extremely daunting. So I wrote a letter. A letter explaining what DPDR is and how I experience it, when I think it started, what I think caused it, my assessment with Dr Hunter, and going to the GP. I wrote down everything that I had always wanted to say but felt too ashamed to.

The build up to giving them the letter was horrendous and my “spaced out” (the name I give my DPDR symptoms) was through the roof. But once I did it and I no longer felt like I had to hide or pretend, it was like a weight had been lifted off my shoulders.

None of these things (going to therapy, discovering DPDR, getting an official diagnosis, going to the GP, telling my family) eased my symptoms. But as a result of them all, I am on my way to accepting my life with DPDR and finding ways to manage it so I can live my life in the fullest way possible