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Feeling unreal: What is it like to live with derealisation?

Monday, 15 July 2019 Manon Elin

Manon blogs about living with derealisation, the challenges she's faced when seeking support from professionals, and the techniques she uses to manage her condition.

Few people seem to understand what derealisation is – even among health workers. So, let me explain what it is, how it feels, how it affects me and some things that can help.

"Derealisation makes me feel unreal as if I’m in a dream but unable to wake up."

Derealisation makes me feel unreal as if I’m in a dream but unable to wake up, lost because everything feels strange, far away from my surroundings, as if I’m about to collapse or lose control and as if my mind is separated from my body. Everything and everyone appears strange and unreal, and it makes me feel that I’m watching everything happening around me, but I’m not actually there.

It varies a lot in terms of how bad it gets. In general, it comes and goes constantly without being too much trouble. It’s not something that’s there all the time, and I can now think about it without experiencing it. Even when I feel OK though, I’m always on edge and worried that it could get worse within seconds.

"The lack of awareness and understanding of the condition is very frustrating and makes trying to get help and get better so much harder."

The lack of awareness and understanding of the condition is very frustrating and makes trying to get help and get better so much harder.

Throughout my teenage years, I thought I was the only one in the world who was experiencing these sensations of ‘unreality’. I had no awareness of what mental illness was in general, let alone being able to recognise the signs of this uncommon condition in myself.

It took almost six years for me to find a name for the feeling and to realise that it’s associated with anxiety and panic attacks. It was such a relief to find a name for these feelings and to realise that other people also have this condition. That’s why I’m so passionate about raising awareness of derealisation. I know how difficult and lonely it is to suffer from this condition without knowing what it is.

My teenage years would have been so much easier had I understood that it’s an illness, and I’m not alone in suffering from it.

I’ve seen numerous GPs and mental health workers over the years, and I don’t feel that any one of them understood derealisation and how frightening it can be. It’s so frustrating having to teach health workers about it when I want answers for myself. Mental health campaigns in general emphasise ‘asking for help’. But what do you do when you finally ask for help, but the health workers don’t understand your illness or know how to help?

Certain things can exacerbate derealisation and feelings of panic: crowds and busy places, places and situations without an easy way to ‘escape’ or to get to my ‘safe places’, tiredness, stress, alcohol, caffeine, PMS (there’s not enough talk about how much PMS affects our mental health!) and the weather.

The derealisation is much worse when it’s cloudy, and when it’s nice and sunny the derealisation more or less disappears. It sounds ridiculous, and I have no idea why the weather affects it so much!

"It varies so much from day to day and from hour to hour, which means that making arrangements is difficult."

Sometimes the derealisation is bad without a reason or a trigger, which is difficult as I can’t do anything to help and I don’t know how long it will last.
I’m always thinking ‘What if I have a panic attack?’, and I’m always aware of how far I am from my ‘safe places’, where is the exit and how would I leave if needed – in every place and every situation.

It’s very unpredictable; it varies so much from day to day and from hour to hour, which means that making arrangements is difficult.

One of the worst things about derealisation is the constant fear that it will suddenly get worse. That fear is always there, every day, before I go out and do anything. The fear is so strong that it’s too difficult to go out at all sometimes.

The following things can help: reading about other people’s experiences, sun and nice weather, grounding techniques and distractions (listening to music or podcasts or focusing on the little things around me). Also, I find it important to remind myself that this will pass eventually. Another important tip is to remember to breath!

With help from counselling recently, I’m trying to change the way I think about it. I’m trying to accept the condition. Accept that it will vary from day to day, and that I need to learn to cope with it, rather than aiming for full recovery. I also try to accept the derealisation when it’s bad, instead of panicking and trying to fight it.

I try to take each day as it comes, accept that there isn’t always a reason why it’s bad. Accept how I feel at the time instead of questioning and trying to analyse why it’s bad and telling myself that I can cope with it, however difficult it can be.

"Living with derealisation is a daily battle. It takes so much energy, thinking and adrenaline to do anything."

Living with derealisation and anxiety can make the simplest of things difficult. It’s a daily battle and it takes so much energy, thinking and adrenaline to do anything.

However, when I do manage to do something, it is much more rewarding. Managing to do something difficult feels much more liberating and gives me the confidence to think that I can cope. Derealisation and anxiety are a huge part of my life, but overall, I can control them instead of being overwhelmed by them.

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