Mindfulness and Dissociative Identity Disorder: Difficulties and Experiences of the Present

CW:  Abuse.  Descriptions of abuse and related feelings 

The following was written in less than an hour.  It's a first attempt at expressing some of what is going on for me at present.  Things are being very hard but this week does feel better.  It's not because any of what follows has got easier but because I've been able to walk ten days in a row and that helps immensely in ways I'll write about one day.  Walking and being under the sky and in green spaces is good for me.  The most grounded I've been in the last ten weeks of practising mindfulness was not when practising mindfulness but when being among the trees, experiencing the reality of weather and, without any effort or conscious intent, connecting my senses with my self and with the world beyond me.

In uncertainties of identity and future, in anxieties of the world opening beyond the almost comfortable solitude, I looked again at an old way of coping and support that never worked out that well. I resolved to give it another try. Perhaps we did not treat it fairly enough first time round. Or second or third time round. Perhaps we didn’t give it a chance to work it’s magic and didn’t give ourselves enough time to build up skills in feeling better. I would try mindfulness again as taught by good people at a local centre with no hint of religious dogma or cultic involvement or pressure to sign agreements or join organisations. The safest of people.

Mindfulness had always been difficult as a practice, as a set of interlinked meditation forms. I understood the theory, understood that attitudes as well as practices had been drawn from their Buddhist sources while leaving Buddhism behind. No altars. No prayers. No talk of how the Buddha is here and can talk with you. No mantras repeating qualities of deities or the divine. None of the things that mean the claim Buddhists sometimes make that they follow a philosophy not a religion is nonsensical. None of the things that I never wish to approach again.  I know perfectly well that mindfulness helps a lot of people.  I also know that it doesn't help everyone and can harm some people which makes the "one size fits all" approach often seen in mindfulness groups and in the chronically underfunded mental health services of the NHS a potentially risky thing.

What remained in mindfulness as taught in that centre I still found hard even five years ago when attending sessions and groups regularly for six months.  Not because of the content and intent of the practices but because of difficult effects upon me when I was still grappling with finding the language to describe autistic experiences and had no awareness of dissociative ones.  I don’t need to write about a past in which I lacked a particular piece of self awareness and in which a fundamental, essential truth was buried so well I couldn’t see signs in the earth.  I truly couldn't.  Three years ago I told a psychologist I never had dissociative experiences.  Because of other things I'd said he didn't believe me even though I believed it and our exploration together revealed things that surprised both of us.

Coming back to the practices has shocked me.  Body scans. Breathing meditations. Kindness meditations.  A set of wise attitudes.  There is nothing wrong with any of those things.  I wasn't expecting any particular problems especially as I've grown far more relaxed and content and confident in areas surrounding autism over the last five years to the extent that while I am autistic the traits and strengths and difficulties it presents are no longer a big part of my self-identity.  Being autistic is just a set of positive or challenging factors that are just what they are.  Much of the time at least.

Yet for me the results have been devastating and it’s taken everything I have to hold myself together, lost in a traumatic past and dissociative present.

In body scans I’ve had flashbacks. Memory fragments that I’d lay aside were they not consistently accompanied by harsh emotion and harsher terror. In breathing meditations the emotions rise from dissociative parts with whom I have no conscious connection. In meditation and beyond my dissociation has increased dramatically. Living in this moment rather than decades ago in moments I can’t remember has been almost beyond me. I drift. I lose time. I lose the narrative. I can’t make sense of my own life or history. In psychology terms I’m destabilised and my reading has taught me that it’s not unexpected for these kinds of meditation given what’s inside me or us.

“Consider the back of the knees. What do they feel like?” The back of the knees! Flashbacks come unexpectedly. I have no way to expect or to guard myself. No way to prepare for the rush as I feel myself, in child body, forced to the ground and feel someone’s knees pressed into the back of mine as I am held down. And I am frozen. Unable to move, to scream out, to live. Lost in hate, in guilt, in powerlessness, in dirt.

“Count the breaths … now just notice how it feels in this moment.” I notice and cannot feel anything in this moment. Cannot be in this moment or exist in the present or experience joy in the sunlight or sadness in the face of another news headline. Notice. Notice. One day I stopped. I wrote down the feelings. They’re not mine. They belong to another within my or our system, to someone I don’t know but who has held memory, held feeling, held the destruction so that I could survive.

I feel … violated

I feel … dirty

I feel … broken

I feel … worthless

I feel … shattered

I feel … lost

I feel … lonely

I feel … fearful

I feel … hated

I feel … destroyed

I feel … no understanding

I feel … wasted

I feel … sick

I feel … I am the wound

I feel … pain

I feel … crumpled

I feel … ended

I feel … pointless

I feel … weak

I feel … ashamed

I feel … empty

I feel … gone

I feel … too much still here

I wrote that list in thirty seconds during the meditation. What experience do those feelings come from? I don’t know. When did it happen? I don’t know. I can’t see how what is recovered can fit into the things I know for sure about my childhood and all the books of photographs that I looked at so often since then. I did too. Those albums stayed on shelves and I never saw them taken off once a year had passed and they had been shown off to family and visiting friends. I would go through every one of them regularly through adulthood. Every college holiday, every visit later. Every photo album. Every picture. Filling the impossible holes and major memory gaps with pictures and stories told around them.

Out of meditation. The feelings don’t ease. Once they’re out, they’re out. Increasing rather than decreasing in power. I feel those things.  Constantly although they are not "mine."  Yes, they are mine, from my life but they are fragmented somewhere in this dissociative system.

I am lost. I am broken. I am violated and worthless and a thing to be used and hated. And I feel shame, guilt, and then feel more guilt for feeling things I know aren’t rational because it was never my fault. Worthless, worthless, shitty, shitty Clare who should not be alive.

But that’s not the end of it. There’s a physical side too. With every flashback, with every visible feeling comes physical pain. Increasing pain. Every joint. Every muscle. I am hurting more and more and pain killers don’t help just as they don’t help with the greater headaches from dissociation and the effort to remain present in some way. I fight so hard. Without strength I would have lost the ultimate war in recent weeks just as I could have lost it repeatedly almost every year I can remember enough to speak of through self rather than pictures. My fingers, hands, wrists, arms. They’re the worst for frustration and for wishing for an end to it all.

In the middle of all that I began to wonder whether mindfulness was meant to be producing such effects. It seemed a strangeness, a mystery that simply noticing your body, your breath, or offering a kind thought could produce such extreme reactions and lead me determined to get through it but having to wonder at times if it was possible in the long term. Obviously the flashbacks came while meditating but was that just a coincidence or was it a consequence of the meditation combined with the post-traumatic, complex dissociative situation we’re in?

The latter, as it turned out. I learn that mindfulness can severely destabilise someone like us and that outside of tailored trauma-informed and dissociation-informed support and trauma-informed mindfulness practices it can be highly dangerous. We need to read more about this. We need to study and learn and find out what is and isn’t going on and to see what the best courses of action may be based on knowledge rather than just instinct or the often conflicted mess of feelings and thoughts within.

I am back at the point where the GP and a prescriber have been worried about us. I’m back to regular appointments to check I’m still keeping going and next week I’m going to ask for more help and possible re-referral back to a specific psychology service. Yes, I will push to be added to another waiting list and this time it’s a waiting list that leads to another waiting list.

As for mindfulness. Should I just stop? Should I finish the nine or ten week course and so get through teaching on all the attitudes at least once? As I type, the next session is in an hour and a half and I’m meant to be logging on for a guided meditation practice in five minutes. In that practice I’ll be going my own way to a large extent because that seems less dangerous.

While persecutors call for self-harm and while I got to the point of having to clear out everything I ever wrote including all the pieces people wanted me to try to publish I personally want to stay alive, stay in one piece. I am worth that. I’m worth better treatment than I give myself. I'm also worth better than those who have been close friends but desert me whenever I am struggling.  I’m glad to have learned that. It took time and work and repeated loss to learn.

I need to be online in a few minutes. No. I don’t need it. It’s not a need. It’s interesting how the sense of guilt even follows for a drop in event run by people who are the antithesis of cult.

I will be online in a few minutes. Persevere for now but taking greater care and drawing away whenever needed.

Yes, we persevered.  The meditation form tonight was a body scan. We got past the back of the knees this time. Then, “What can you feel in the lower back?” Okay so I can now feel someone’s hand rubbing across my back. Rough hand. And I see yellow and smell tobacco, stale and strong and I feel like vomiting and feel helplessness and terror and like I’m drowning in crude oil.

I tend to call that a flashback. But I’ve decided I shouldn’t use the word perhaps because these are events and emotions that I cannot consciously remember because they are not mine/Clare’s. They’re all held by others in the system, a system that seems to be made of fragments without substantial form and of parts that have volition and character and who can talk and make decisions and who I currently don’t have a lot of communication with although I hear them. When I say flashback the assumption others make is that it’s of an event I can remember and which is held by me. The experiences are similar but they’re definitely not the same.

And when I’m advised to let it go and let it pass? I can do that with my own emotions and memories and thoughts, at least to some degree. I’m by no means perfect at that and can dwell in places that don’t need dwelling in. But can I do it with emotions and memories and thoughts that aren’t my own? No. At least not right now. I can no more do it with the skills I have and with the lack of communication I have than I could let go of the feeling of molten lava or the sound of screaming if played at 130 decibels through my headphones.

That’s not an adequate metaphor either because those things are external. I can’t let go of the experiences that aren’t mine but which cry within me so forcefully any more than I could let go of needing to breath if holding my breath. Determination doesn’t work. Kindness doesn’t work. Awareness and acceptance and not wanting change won’t work. That need to breath is real and denial is ridiculous. Even that isn’t an adequate metaphor for what it going on or what that hand felt like or what that tobacco smelled like or the emotional states that have been held and crushed for so long.

After the experiences of that body scan, we still went to the teaching session afterwards.  The final session of the ten week course.  We made it to the end and my head is intensely painful now and I have some lost time during that session so probably someone else was fronting for a bit.  With the session being held on Zoom and our camera and microphone both turned off that won't have affected anyone else's experience which is reassuring to me.

I have typed enough. It’s barely a beginning and as a first attempt hardly expresses anything clearly. There is much I’ve missed out. Inner experiences. The increase in dissociation even while letting the reality of the external slide past in meditation. I haven’t written about what happens whenever I close my eyes and that might be the most distressing and tiring thing I have at this point.  Even blinking is a strong glimpse into the darkness, one I can't avoid for long.  I’ve not described it. Was that intention or just forgetfulness?

There’s much that’s totally unclear even in my own head. Perhaps I am unable to express or explain right now. That’s okay. I accept that. Mindfully.