Living with Depersonalisation and Derealisation
Posted by Belle
28th Feb 2015

“I don’t feel like me anymore. I don’t feel real”
“I don’t know who I am anymore”
“My reflection scares me, it doesn’t look like me”
“It feels as if I am living in a cartoon or a movie”
“It is as if I am looking down on myself, detached from my body”
“I no longer recognise my family or my friends. It’s as if I’m with strangers”
“I’m losing my mind. They're going to cart me away"

Do any of the above apply to you? I can honestly say that regardless of the inability to breathe, the loss of vision, jelly legs and dizziness, depersonalisation and derealisation are by far the most terrifying symptoms of 'anxiety' (something that I will dispute later on), particularly when, like me, you have had to endure it constantly over a long a long period of time. Very often, one of my greatest fears will be to lose my mind and be sectioned indefinitely. I can envisage myself being carted away kicking and screaming, drool dripping down my face with an expression resembling that of the girl out of The Exorcist. However, I have often also questioned this same fear and genuinely believe that, to an extent, a part of me wants to be sectioned. I crave that constant support - having the professionals there to give you your medicine and tell you that what you are experiencing is 'totally normal', to be around fellow sufferers and consequently not feel quite so isolated. I want to feel understood. I want to feel ….. safe.

Have you ever tried to get a non - sufferer to understand just how depersonalisation makes you feel? Yes they may try, they may tilt their head at the right time and they may remind you that you are 'not alone', but that does not help in the slightest. I have had people tell me to 'ignore it' and to 'remind myself that people will pay good money to experience a similar trip'. How do you actually ignore depersonalisation, though? The level of fear the illness carries can never be put in to words. Trying to get a supposed 'mental - health professional' to understand the effects of depersonalisation and derealisation is like banging your head against a brick wall. Are they not supposed to be the ones with all the answers? Are they not supposed to have that magic cure to take away all of the angst? I fail to recall the number of times I have been asked by mental health professionals to explain how I am feeling, as I am left begging them to help me, to wave a magic wand and make me feel at one with my body once more. Throughout my 3 1/2 years living with depersonalisation and derealisation I have spoken to six therapists and nine doctors and I can honestly say that not one of these has been able to empathise with how I am feeling, with most choosing to overlook it as being yet another symptom of anxiety. A ‘symptom of anxiety’ makes it sound so ‘inferior’, does it not? Heart palpitations and dizziness are ‘symptoms of anxiety’ that can be dealt with and forgotten about but depersonalisation and derealisation, really? Well I will tell you ‘professionals’ something for nothing – the next time a patient walks in to your office showing any of the symptoms listed above, take them seriously and do not fob them off like you have done me. You will never understand the strength and courage it takes for a person to go on while experiencing this. While the intrusive thoughts, the vomit inducing fear and the isolation as you struggle to gain an understanding of not only who you are but where you are is something that us sufferers will never be able to explain, we would give everything to hear those four simple words “I can help you”. I am welling up myself right now while writing this.

When having spoken to previous therapists about my depersonalisation and derealisation, one of my first questions asked was always whether they held a basic understanding of each disorder and indeed that they had the resources and expertise to treat them successfully. My mind was, of course, put at ease when their initial replies were yes, and that they had even experienced said disorders themselves at some level or another. Bingo. It was as if all my Christmases had come at once. I had finally cracked it. Someone was finally going to listen to me and take me seriously! However, this level of elation was always short lived (shocker) as, upon starting therapy, this was never the case. Now I am in no way a violent person, Jesus, I feel guilty killing a spider and those things terrify me, but I would often envisage myself smacking each of their faces on the table at least once during our sessions. You know that infamous scene shared between Jane Fonda and Jennifer Lopez in 'Monster in Law?' Keep that one in mind. I found myself having to bite down on my lip on numerous occasions as they each tried to fob me off with answers such as ‘It is your panic attacks’, or ‘you must have been in a high state of anxiety’, or ‘your mind is exhausted’. Huh? I have had this for nearly three and a half years and, after all of your mental health training and your apparent expertise, you are trying to tell me that I am living my life in a constant panic attack? I napped for 3 hours this afternoon and had 6 hours sleep last night but you are trying to tell me that I am not getting enough sleep? I am slowly starting to understand why many mental health sufferers are losing faith in the mental health system. The support and understanding is just not there.

With regards to daily life with depersonalisation and derealisation, to you, the observer, I am me. I smile. I laugh. I function. I can hold a conversation, whether that may be for a limited period of time, and I still bear that same old (cheesy) sense of humour. My hair (mostly) looks nice (we are all allowed off days), I wear makeup and I have a pretty impressive clothes and shoe collection for an agoraphobic whom rarely goes anywhere. My mind, however, tells a different story for it is as if I am trapped inside a locked, invisible box; I am unable to break free from the chains keeping me from stepping back into reality, alone, scared and vulnerable. During a heightened episode of depersonalisation I lose all ability to function, to communicate with those around me. I can hear conversations taking place, see their mouths moving, but I am unable to process what is actually being said, nor form a sentence as a means of involvement. My speech becomes slurred, my breathing shallow and my vision distorted as I can feel the chains tightening. I have even, on a few occasions, been left unable to consume solid foods due to my mouth not feeling like my own, as if I am chowing down on cotton wool (one of the most difficult and surreal sensations to explain). My body will become ‘psychologically’ numb, as if I have been transported into another person’s being. I will very often believe that I am not supposed to be this person. That, without my knowing, the infamous ‘Freaky Friday jolt’ has taken place and I am a trapped soul waiting to be returned to the correct body. That is just how scary these disorders can become!

And then the ‘brain fog’ will slowly begin to creep in as a task as simple as making a hot drink becomes an uphill challenge. Now how do I turn the kettle on again? Where did I put the coffee and sugar? Matthew said he wanted a tea and Lee asked for a black coffee with no sugar, but who are Lee and Matthew? It feels as if I have been placed in a room filled with strangers, like I have accidentally walked in to the wrong house. My surroundings appear to resemble a scene from a movie set as I find myself patting the settee, touching the television cabinet or cuddling my dog, Max. I will pace, through fear, believing that maybe if I walk quickly enough I will be able to ‘get away’ from myself, that the chains will automatically start to unravel. Surprisingly enough I will do the same while having a panic attack, as if crossing the road or moving from my living room to my bedroom will become a game of hide and seek and the dreaded anxiety will not be able to find me. I will pull my hair, bite my skin, claw at my face and even scrape away at my arms and legs with the sharp edges of bottle caps and plastic pots in the hope of inflicting a level of pain strong enough to make me feel ‘something’. But that I cannot. I am both mentally and physically numb On occasions intrusive thoughts have even led me to believe that I am either being filmed for a sequel to the Truman Show or that I am in a Crime watch re – enactment, and that, somehow, I am merely an actress in a scripted documentary and the producer/director will be calling it a wrap at any given moment. Sounds crazy, does it not? I dare you to not laugh.

However, despite all of this, the most emotive factor of depersonalisation is that my brother no longer feels like my brother and, each time I meet up with my 'friends' or those I am supposed to 'know', feels as if I am meeting and getting to know them again for the very first time. In a sense, I have had to create a new world for myself (maybe this is why I am such a pro on The Sims. I have had to get to know Matthew and those surrounding me again, as this ‘new Krista person’, while constantly reminding myself of the fact that they are indeed who they say they are, even though it very often does not feel that way. I will experience numerous debilitating panic attacks and heighted ‘out of body’ sensations while browsing through old family photos, or speaking to old friends and family. While it takes every ounce of strength and energy I possess to hold down a conversation with said people, and put on my ‘everything is okay’ mask, that familiar OCD voice of self – doubt will be screaming “Get out!! They’re intruders! They don’t really know you. They’re lying to you! It kills me to say this but while my Mum may ‘only’ have been passed for fourteen years and a very close friend for just over two and a half, I no longer recognise them when I look at their pictures. Were they actually ever really here or have I instead dreamed up this whole fantasy world and will instead wake up tomorrow?

Now can you understand why it feels as if I am a part of some low budget American movie? Through sheer frustration and confusion I want to throw my arms up in the air, to scream, to bang my fists. I want take hold of the nearest person and for them to tell me that I am actually still here and am not losing my mind with such conviction that my tainted mind actually believes it. I have never been one for wallowing (unless it comes to an assignment grade that I knew I deserved higher for) but the effects of depersonalisation and derealisation will often have me curled up on my bed or the floor in the foetal position, staring into thin air with tears streaming down my face as I pray for this torture to be over soon. I have often been told to remember ‘happier times’ when I am feeling low and use them as a method of lifting myself up, but how on earth do I do that when it does not feel as if I was a part of said memories. Was I an intruder? Because of everything listed within this article, I now have great difficulty in building relationships and meeting new people, an act which came so easily before depersonalisation had taken control of my fragile mind. I mentally and emotionally cannot handle human interaction. I will now regularly repeat my name and stare at my reflection in the mirror in the hope of it bringing me back into reality, allowing for my mind and body to reconnect so that I can then break free from the chains of the invisible box. Through desperation, I will spare a silent prayer each night before I go to sleep in the hope that, come morning, this will all be taken away. I just want to feel like me again. I just want to feel part of the real world. I want the old Krista back, even though I am no longer sure who she even is anymore.

I am fully aware of the fact that there are limited resources surrounding living with and overcoming Depersonalisation and Derealisation, heck I am still learning myself. However, I will always do anything in my power to help fellow sufferers, and so I hope that this short blog has been of some help. While I have yet to find coping strategies that work for me, I have acquired a few through Cognitive Behavioural Therapy sessions which I hope will be effective for others.

• Sucking on lemon slices - It has been said that the sheer bitterness of the fruit will jolt sufferers back into reality.
• Playing the senses game - A weird one, but fun for passing the time when stuck in traffic. My depersonalisation will always worsen while travelling so this game has come in handy as a form of distraction. To do this you must name 5 things you can see, 5 you can smell, 5 you can touch and 5 you can hear. If you are playing with a partner it can get pretty difficult as you are not allowed to repeat any answers.
• Blasting your face with ice cold water (not ideal for us girls wearing makeup). It has been suggested that a blast of cold water on the cheeks will help ease symptoms of depersonalisation due to there being numerous nerve endings in our faces.
• Reading self – help books. Overcoming Depersonalization and Feelings of Unreality contains a number of valuable resources such as symptom charts and definitions.

Maybe one day we will be lucky enough to have the medical resources to overcome these illnesses. For now, though, we must continue to support one another and educate ourselves.

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