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‘know I’m not faking’ I’m experiencing dissociation

Explaining dissociation

To start this post I would like to explain the differences between dissociation and its different types. 

Although non-epileptic seizures fall into the dissociation category that has not always been the case. Now more commonly named dissociative seizures, which is better fitted and puts the condition into the dissociative category. There is a lot of confusion and stigma around the condition namely because even doctors have used the fake word or make you feel like you are putting them on because they do not appear on an ENG. This is so UNTRUE. Dissociation is widely misunderstood and stigmatised like the majority of mental health conditions. Dissociative seizures are a form of dissociation but also include a physical element related to seizures, including convulsion of limbs, staring, thrashing and this list is not exclusive as everyone varies differently.

 

There is a lot of varying definitions on dissociation, one explanation says dissociation is a way for a person to deal with stress by disconnecting from sensory experiences and also a loss of sense of self and surroundings.  The actual definition online is not so great, the action of disconnecting or separating or a state of being disconnected. Action implies it is consciously done which is not. Disconnecting fits but its an unconscious disconnection. I believe what is important is everyone experiences dissociation differently, it can start an early age, it can be caused by trauma or be a part of another mental health condition 

More information can be found in this extensive document, including types, where to find support and treatments. 

 

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Dissociation vs dissociative seizures

I was diagnosed with dissociative seizures or NEAD is another name, its a part of functional neurological disorder. My experience of an episode is feeling distant like I’m not in my body, I can’t speak, I’m floating in and out of existence, I can hear you but its muffled and I’m not here really, I’m paralysed I can’t control my body movements. If you looked at me you’d probably think I was drugged or sleepy, the only signs of a seizure are eye-rolling but sometimes my eyes just wander around the space but I’m not seeing reality as it is.

 

An overlooked part of the dissociative seizures in my case is the dissociation that occurs day-to-day. This part of the condition isn’t talked about as much and can be easily under looked when seeking treatment. I have no other diagnosed dissociative disorder but I still experience symptoms outside of the seizures. There is an undercurrent of the dissociation, it creeps into everyday life and often I lose focus when my whole mind and body have disappeared somewhere else. 

 

 

Becoming aware of my condition has taken time,  I try different techniques to ground myself in the body and I’m more aware of the spaced-out feeling. I often have to strain my mind to focus, I also have to strain to stay aware in a conversation with others. With every strength, I try to avoid it or strive past its presence, sometimes I experience this only other times it leads to a full-on dissociative seizure.

 

What is it like to experience dissociation?

At first, encountering an experience of dissociation was scary it made me panic, I couldn’t explain it to anyone how it really felt. It then left me and the medical profession confused for a long time. Today I’m a lot more self-aware and able to some extent explain what it feels like and how it appears. This is my account only and a lot of people experience dissociation differently.

How does dissociation feel?

Sitting here on a warm sunny day and there we go again, that feeling of disconnect, it takes me two days to realise it, as the brain fog and lack of focus have taken over.

I begin to realise more and more that dissociation is present, it isn’t just being miles away or spacey its a sense of not being here in that space, not just in mind but also body. It is unpleasant and frightening to experience. I can pinpoint who I am and my current life, somehow I’m experiencing it outside of myself.

 

Common phrases I use

  • I don’t feel right today 
  • I’m not quite here today
  • I’m detached from my body and emotions.
  • I can hear you but its not sinking in and I struggle to respond.
  • I know who I am yet I’m not here

How self awareness can help

Years ago I couldn’t even explain what was happening in those moments and I was far from aware of the early signs or that I even was distant, I was always saying I’m fine it’s like I knew but my brain was not connecting the message. These days I’m aware I’m spacey and unengaged from the conversation, I might even seem rude but really I’m not quite here and can’t string the words together. I know its happening and with every strength, I breathe and try to ground myself but often it feels like I’m fighting it to stay focused and aware.

 

I can not stress enough the impact of focused awareness and viewing my body with an accurate lense of awareness. Getting to know what exactly I’m truly feeling has opened space for me to understand what exactly I’m experiencing. This has come through a range of meditation, cognitive therapy, talking therapy and also keeping a frequent diary of events and journaling my thoughts regularly. This allows you to know your triggers and develop alternative coping strategies. Constant trial and error have really been key to keeping up a lot of the practises and techniques I use on a regular basis day-to-day

Tune into your senses, touch, sound and smells
Tune into your senses, touch, sound and smells

Try these practises

Writing in a journal has become a way of releasing my thoughts onto paper, I can vent everything I feel and its my own private space, to get all the thoughts and emotions out of my head. Journaling helps to recall memory, helps track what lead up to an attack, helps to improve awareness and lost connections. It also maps out feelings and thoughts, and things that can help or make the condition worse. Importantly it is a place I am not judged for what I write, it’s only for me to see and I’ve learnt a lot about myself this way. 

  • Try freestyle writing, just a pen and paper is needed, write everything that comes to mind regardless of what it is and remember to keep it where know one else will read it.
  • Try Grounding techniques such as tuning into the sense of touch, sound and smells in the present moment, feeling into the ground beneath and grounding the mind on the breath are all helpful and I use these daily.
Freestyle writing allows space for thoughts to flow on paper
Freestyle writing allows space for thoughts to flow on paper

Knowing my triggers

I became aware early on that the dissociation was a way of escaping my painful body or uncomfortable symptoms. I was very pain-sensitive and my mind found a way to cope with that, the irony being dissociation is painful to experience. It is key to understand that there is no control over this, non of us decide what our brains do. Over time I’ve realised anxiety and panic over body sensations can induce dissociation. I learned that overwhelm was a big trigger,  becoming overly stressed or overwhelming my body physically. 

 

Even though I’m finding ways to cope with pain through meditation and mindfulness, pacing and the getting my pain relief adequate enough. There is some way to go with feeling overwhelm, being in a chronic body often I become frustrated and overwhelmed by physical tasks and the increase in the discomfort I experience. Then there is the pace of modern-day life and its expectations and the overwhelm that accumulates from this. There will always be triggers but being aware of them makes it also easier to live with, this by no means that you have to avoid everything otherwise I would never move or have new experiences in life, there are coping strategies out there and also sometimes you have to take a risk and learn from it and often I’ve been surprised how I find a way to cope.

If you need more information on Dissociation a downloadable booklet can be found on he link below.

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