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The A-Z Blogging Challenge - E for Existing

By Berlou

We haven’t had loads of ideas for E, we considered emotions but realised we could talk a lot about existing… However, since we started this, we realised someone else was planning to write about energy when we got to E… there was surprise when whoever it was realised we were already writing about E! We considered doing both but will come back to energy when we’ve got through the rest of the alphabet, and have more. 

We are struggling with this challenge, it’s hard, and we have limited capacity, we wanted to get this done yesterday but we had internal things happening (Amber returning for the first time in months) and external things happening (seeing the mental health nurse who has been supporting us for three years for the last time, but it wasn’t the last time when we got there, which was both good but also needed to be processed by this very limited human brain). Amber realised she was herself after Andy the MH nurse called us into his office, perhaps the two were related.

So, we were physically, emotionally, and mentally a mess, and writing was impossible. But we’ll keep going, and if we need to continue into May we will. 

We’ve always been interested in philosophy, I even recall us wanting to study philosophy when we were at school. Our bookcase is riddled with books considering the nature of life, the evolution of a human life, and how to find meaning among the chaos of being human. We could dive into philosophical ideas about existence, but we’re making this more personal and about our experiences of and thoughts about existing. 

Existing and DID

Existing is weird, being a human is weird, and when we have DID things can get really weird, really fast - especially as we need to accept things that don’t seem real, don’t feel believable, and go against much of what we’re taught about living and life (in the modern western world, anyway).

As we know, one of the main criteria for DID is the presence of two or more identity states within a single individual, this alone is WEIRD - and when we start working this out, it throws up all sorts of existential questions and confusion. How is this possible? How can one person actually be many people? Where do I end and you begin? Who am I if I’m you too?

It’s confusing. It’s scary. It can make no sense. Until we start to pick ourselves apart and figure out the why’s and how’s anyway. 

And then there’s the neverending stream of misinformation and stigma about DID. Most depictions of DID within TV and media are inaccurate and feed into the common stereotypes, there are many people online who seem to take great pleasure in fakeclaiming and mocking those sharing their experiences, doctors, psychiatrists and other healthcare professionals can have limited knowledge about DID and can feed into the doubt and denial - all of this compounds an already difficult existence.


Realising DID and working on integration and communication

When we started working out we were a system, we didn’t know about DID, so we didn’t have that framework to make sense of our experiences. And the (trainee) therapist we were seeing didn’t suggest DID to us/Amber, she allowed Amber to explore this very strange realisation that she had ‘inner children’. It was a friend who directed us to DID after there was a bunch of us out, consciously living our life together for several months.

If Amber hadn’t been open to the idea of having inner children, our system might not have been revealed. In the beginning, communication was incredibly hard between Amber and Isabel, they’d found each other and started communicating after whisky and weed, and Amber had to work very hard to figure out communication without being drunk and stoned!

She found hypnosis techniques (simple intentions and counting) could bring Isabel closer to her, and into the body. Communication was still hard though and they couldn’t just think at each other, our consciousness was either one or the other of them, but not both, and it took months of us working on integration before we could function as the blended mess we are now.

They found they needed to either speak out loud or write to be able to effectively communicate, which is how we came to write so much.

The dissociation tricked everyone here into thinking they were all Amber, our consciousness is arranged that as we switch, there’s enough information about the recent past that we don’t realise it wasn’t us, we don’t realise we weren’t here. We might have different feelings about things that have happened though, which can cause confusion. Amber often had no idea why she had acted in certain ways that were out of character, she’d never have guessed it was because it wasn’t actually her though…

Our amnesia is sneaky too, we’ve rarely had chunks of time missing - except after drink or drugs, but assumed that was normal, and Amber knew she could blackout if she wasn’t careful. But it impacts our daily life, even though we rarely notice it, are now consciously aware of our many selves and the nature of our existence, and we mostly all have access to all available information about the life.

Existing vs living: survival mode

In the three years since we found each other, we have spent a lot of time existing and not really living. When we’re finding each other, processing trauma, going through painful life events, and healing, living can be impossible. We just exist in survival mode, we go through the motions - feed the body, walk the dog, entertain the brain, and often distract distract distract from the emotions we’re aware (or not aware) of. 

When we’re in survival mode, which most trauma survivors will understand the feeling of being in, we can’t live, we can’t plan, and often we can’t find joy or gratitude - Mia has complained a lot about our spending the days waiting for the nights and the nights waiting for the days - and when you do this for months on end it’s exhausting and debilitating.

Survival mode has physiological and emotional repercussions. There are hormonal implications as our body continuously releases cortisol and adrenaline, which can lead to burnout and physical problems. It can cause narrow focus - all our energy goes into surviving and assessing for threats, so non-essential tasks aren’t seen, planning for a future can feel impossible, and decision-making can be impaired.

Moving out of survival mode

We can’t get out of this mode if there are still people/parts within us who are stuck in the past and are carrying unhealed trauma, we might not always be consciously aware of them, but they will always be there and can still impact everyday life.

And even when we do start to integrate and heal, it can be very hard to move our minds and bodies out of survival mode - we might have been there for decades, so it takes time, patience, love, and understanding. When you consider that we can have identities trapped within memories or emotions, only experiencing a single (or repeated) traumatic event for many years, it makes sense that it takes time to heal and shift out of survival mode.

Another aspect of DID is the fighting and self-advocating to access help, we are struggling at the moment because, for the first time in three years, we don’t have anything to fight for - we got the diagnosis, we got the PIP, and we’re now a few months into specialist therapy, it’s weird. If we don’t have something to complain about, fight for, what do we do? We even said yesterday to Andy MH nurse that we miss the adversity! Who are we if we’re not fighting for something? We genuinely don’t know.

Existing with DID: managing the present and finding our futures

Making sense of our existence can feel impossible when we have DID - considering the intrinsic identity confusion, our often extensive experiences of suffering and survival mode, and the obvious weirdness of living like this, it’s not surprising. 

But we’re living in a time when people are being open about this, we know we live in a DID bubble, but so many people are now sharing their experiences and trying to educate others about DID that together we can hopefully find our places in this strange (and often cruel) world.  

We have to be open to the unknown and the scary, we have to explore our shadow sides in ways that even many of those advocating for shadow work could not believe, we need to be open to and accepting of all aspects of ourselves, but together with our systems we can do this, we can heal, we can integrate, and we can lead meaningful lives (perhaps they’ll never be ‘normal’ lives though!)

Existing with a dissociative disorder is scary, it’s hard and it’s unfair, and the realisation of DID is multifaceted - we can experience joy at finding answers for many unexplained experiences, while simultaneously being terrified of what we might find within ourselves and our pasts. We can find such relief when we do find answers, just to be damaged time and time again by poorly equipped healthcare systems while we try to get help. 

We’re grateful to all the systems out there bravely sharing their stories, the more voices we have and the more we spread factual information the better it is for us all. But we’re all struggling and we’re all stuck existing in an unaccepting world, but, hopefully, together we can improve it for future generations, and create a world where every existence is valued.

~ Berlou 

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This part especially, resonates with what Barbara is going through "Mia has complained a lot about our spending the days waiting for the nights and the nights waiting for the days - and when you do this for months on end it’s exhausting and debilitating". You write about something so complicated, so clearly...

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We're sorry it resonates with her so much, it really is so hard to get through. We really hope she finds ways to heal and live soon. - Mia and Berlou <3

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