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Love of one's fate – living with depersonalisation-derealisation disorder

This story was written by Iona about her experiences of depersonalisation-derealisation disorder (DPDR).

It was Sunday 13th January 2013. A peculiar cluster of feelings fell upon me. Light-headedness. Floating as if the earth had lost all its gravity. A complete detachment from my body.

Was I in a dream? No. My 5 senses were intact. But my hands felt like foreign objects with zero connection to me.

My mirrored reflection, a stranger. I was unreal. What was all of this? Surely these feelings would end momentarily. That day, they didn’t.   

The following morning, I booked an emergency appointment with my GP. Diagnosis? Possible dehydration.

I frantically drank litres of water in the hope that this peculiarity would miraculously disappear. No change.

Another trip to the GP led to stopping recently prescribed anti-depressants. Still, no change.

At this point, I’d been living in this realm of unreality for a fortnight. Persistent brain fog. Emotionally numb, I desperately yearned for freedom.

I had a one-off psychiatrist appointment on the NHS. Finally, an answer after a few months of waiting.

"This unreality is caused by anxiety", he said. This explanation left a lot to be desired. So I did further research.  

My unreality had a name. Depersonalisation-Derealisation Disorder (DPDR). But what was it?

DPDR is a dissociative disorder. Depersonalised individuals report being a spectator of their own body. Like they're watching themselves in a movie.

Derealisation can be described as being in a dream-like state having brain fog, visual distortion, or seeing the world as “unreal”.

Many people like me experience both depersonalisation and derealisation. Or, in rarer cases, separately. (To know more on this, I'd highly recommend Dr Dawn Baker et al's book, Overcoming Depersonalisation and Feelings of Unreality.)

I was left without a formal diagnosis. It can taken years to receive an official diagnosis of DPDR. And there's no definitive, one-size-fits-all cure.

Causes for each individual case vary. Trauma, anxiety, and illegal drugs are said to be causes.

Talking therapy can work extremely well for DPDR. Cognitive Behavioural Therapy (CBT)  can relieve it. Perhaps this was my ticket to freedom? The NHS waiting list, however, was several months.   

Fast forward to mid-2014. I was still left to my own devices. I'd systematically eradicated anxiety-inducing stimuli from my life. I was 21 and in the second year of my degree, in French and German. Possible failure caused me severe anxiety.

So, I suspended my studies. I became a self-confessed gym bunny. I slept, ate and drank well. My DPDR improved. I'd had enough of waiting and sought a private CBT practitioner. With only 8 weekly sessions, his work was limited. But he offered memorable advice.

"Do things that draw your attention away from DPDR. Create an external focus."

Inspired, I lived as if DPDR-free and resumed my life and my studies. It worked despite some occasional reminders.

I sought support from a private psychiatrist who prescribed Lamotrigine. Not a magic pill, but it relieved some of the intensity of my symptoms. 

Over time I developed a stoicism, enduring my unseen symptoms in silence. This increased my mental resilience.

I found out that full recovery for DPDR wasn't a guarantee. I thought I'd hit a brick wall.

5 years of this state before I decided to re-tackle it head-on. This was prompted after receiving a life-changing mental health diagnosis.   

In late 2019, I was diagnosed with Emotionally Unstable Personality Disorder (EUPD). This sometimes contentious personality disorder can have severe symptoms.

Fear of abandonment and self-destructive behaviours to name a few.

I came to the realisation that my DPDR had a specific purpose – numbing. To treat DPDR, I had to effectively treat the overwhelming stimulus in my life – my EUPD.

I felt empowered. I’ve been practising Dialectical Behavioural Therapy (DBT) for the last 4 years. It’s not a magic wand, but it relieves my DPDR symptoms through its grounding.  

It’s been a 10-year battle and I’ve yet to find the ‘cure’ for my DPDR. There were times when I regretted being in this constant state of unreality.

But I was recently introduced to the idea of Amor Fati, or “love of one’s fate”. Suffering can be a necessary part of life.

I realise that my DPDR had another function – to be the suffering that leads to something good. This “something good” would ideally be to regain reality. But I realise that reality has never left.

I still experience the beauties of life and its great milestones. Whether my DPDR goes or not, I know that I can and will appreciate life in its entirety. With or without it.   

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