I Wasn't Created in a Therapy Room: My Experience of Dissociative Identity Disorder
[Content Warning: Mention of self-harm, suicidal ideation, child abuse, physical assault]
I have a dissociative disorder. This has been my life and my experience for a very long time, but I do not talk about it openly. Writing this blog post has been very challenging, as it goes against all my normal rules of keeping myself hidden, secret, and safe. I felt, however, after seeing a number of unpleasant tweets about dissociative identity disorder by “professionals” during mental health awareness week, I should be more open. Mental health professionals do not own the narrative of lives they do not live.
Please note - This is my life, and my experience, in my words. I’m not here to write any sort of explanation for how I have come to exist like this, or what psychological processes occur which lead to dissociation. I wouldn’t do the topic justice. I’m also not writing about anyone’s experience but my own. Please do not apply anything I write to any other person. I am no spokesperson. This is just an honest account of my own experiences with dissociation from childhood to adulthood.
I have other parts to myself. That’s the headline. I am not going to talk about them in great detail, or really provide any description of who they are. They are private and I am not an exhibition. I will merely state that I have roughly half a dozen parts within myself which exist and think separately to "me". They exist purely within myself, I do not see them as hallucinations outside of my body. A couple of them have names which are different to mine, most of them do not have names. While I am female, some of my parts identify as male. They also feel as if they are different ages to me. They have different feelings about situations, different thoughts, different desires, different motives, and different goals. Sometimes a part or several parts may feel very present, and when this happens, I can feel their feelings, and hear their thoughts. These are different to my own feelings and thoughts, which can sometimes be a difficult experience to sit with, and very hard to properly describe. Sometimes I am not connected to the parts at all, and I do not know where they have gone or how to access them. I don’t have control over them and cannot summon them up on command. Sometimes I can communicate with them directly, and have a conversation in my head, other times I can gauge their position by putting a thought or idea out and seeing if there is any response. Sometimes I disappear inside myself and another part of me takes over – this can lead to periods of amnesia, or the experience of “waking up” in the middle of doing something. Sometimes I do not experience amnesia, rather, I feel as if someone has lifted off the top of my head and poured a large bucket of cold water into me, washing away all my thoughts, and all my insides. Other times I experience “absences”, and rather than parts coming forward to fill these times, I just disappear entirely and cannot move, or speak, or think. Mostly I do my best to ignore the existence of these experiences and pretend I am alone in my mind.
I do not want this to be my life. I do not want to be this person. I am not proud of this. I feel great shame and embarrassment and most of the time I live in perpetual disbelief at my own experiences. I must be lying, I think to myself, there must be another explanation. Maybe I’m just a bad person who is making this up for attention, I say, before remembering that, apart from my partner, no one in my personal life knows about it, and I have done my best to withhold it from almost every clinician I have ever met. Ultimately, it is a constant battle to believe myself, believe I have ever experienced trauma, or ever experienced dissociation. This makes it particularly difficult to cope when mental health professionals, the very people who are supposed to provide answers and support, openly broadcast their disbelief.
I realised I could split myself off from my body when I was a young child. My memories of the abuse I experienced is fractured and chopped up. I started to separate myself from the world and my body as an unconscious response to the overwhelming feeling of not being able to escape the abuse, but I didn’t have any form of control over it until I was a little older. I have a vivid memory of lying in bed when I was about 11 or 12 with a splitting headache, trying to actively call up this feeling of drifting away, and discovering I could simply walk though a door in my mind to the “other place” where I no longer lived inside my body. I thought I was amazing, I was magic, I had a secret ability to leave myself behind and separate off from physical pain, fear, and situations I could not escape. I did it more and more. I didn’t want to live in my life, in my body, in my reality. I wanted to be safe. The “other place” wasn’t some form of fantasy land or theme park in my mind, it was just nothingness. Disconnect. I would just disappear and come back later on, when things were safer or less painful. I experimented with this feeling on one occasion as a child, staring at myself in a mirror whilst conjuring it up. My memory of what happened is more like a bad trip than reality, I really frightened myself. It seemed as if my face actually changed in front of me and I no longer recognised the person in the mirror, nor did I know who I was or where I was. I never tried it again.
The haziness lessened as I grew older. I started to lose the control I once had and saw sharper lines in my “drifting”, as I call it. The first non-hazy blackout I had was when I was a teenager. I was living rough and my friends and I were attacked in the street one night. I was beaten with a metal bar and had my hand broken. I remember being grabbed by two men as they tried to pull me down to the ground, kicking the backs of my knees to make my legs bend. The memory sharply cuts off there, and I descend into darkness in my mind. I don’t know what happened after that for a number of hours, but I do know that from then on, blackouts of this kind became more frequent. I lived in extreme chaos for a good few years as a teenager. I had escaped from the abuse, but I still wasn’t safe. In fact, living on the street for those four years, I was in constant, unending danger. I couldn’t understand what was happening with the blackouts. I didn’t know how to explain it to myself. I thought about when they occurred, identifying a common theme - before I disappeared, I was under threat. The only thought I could arrive at was that I was just so stressed in those moments, my memory became overwhelmed, and I hadn’t stored it properly. I drew pictures of myself with reams of video tape pouring out of my head, getting tangled and damaged. I did not connect the blackouts with my experiences of “disappearing inside myself” as a child. It would be a few years until that fell into place. For now, I decided I had a problem with my memory. My friends recounted stories of our adventures that I did not remember, memories I did have of particularly difficult events were fractured, like jigsaw pieces. I sometimes remembered only the beginning of things or had flashes of what was happening. Sometimes I remembered things as if I had been stood nearby, watching it happen to someone else. I found it hard on occasion not to doubt my memories, but often things had been filmed, photographed, or witnessed by others, making them impossible to deny.
My life took a turn for the better when I reached my 20’s - I managed to scoop myself up off the street and, through night school at the local college, succeeded in getting into university. The best explanation I have for what happened to me at this point is that I had spent years running from my past, trying to avoid it and forget it, but when I arrived at university, I stopped running. I had to; I couldn’t maintain my chaotic lifestyle whilst studying. So, I stopped, and without warning, everything I had been trying to avoid hit me like a train. My go-to response for difficult situations was to disappear, to feel numb, to black out, but I was studying a really intensive course, I needed to be present. I reached a point when the drifting was so out of my grasp, I started having to use self-harm to control it. I was so detached from life and missing so much time, I began cutting to pull myself back into my body. I was also losing my main coping mechanism, avoidance, so the self-harm helped deal with all these emotions I hadn’t wanted to feel for so long.
I was now in a position of having to face my feelings, and along with them came some of the memories I had not forgotten but had not wanted to think about for many years. In between trying to avoid the memories, usually late at night after a few drinks, I made some very painful attempts to really think about what I had experienced as a child and reached an understanding that I had many walls inside myself which guarded places I did not have access to. This is when I began hearing voices. They weren’t outside of my head, like hearing someone chat next to me, they were more like recalling music or dialogue from a film – someone else’s words, someone else’s thoughts, inside my head. I found this incredibly frightening to begin with and struggled to cope with this feeling of intrusion. I did not share this with anyone, because typing “hearing voices in my head” into google came back with thousands of websites telling me I was schizophrenic, which scared me. I wanted help with all the feelings though, so I disclosed the self-harm and suicidal thoughts to the university counsellor and was eventually picked up by NHS mental health services and diagnosed with PTSD and depression. I was initially sent to a strange psychologist who I did not want to speak to, but did not want to offend by saying so, so we spent appointment after appointment just sat in her office saying nothing. She wanted me to recount all my trauma on demand, fill in endless mood questionnaires in every appointment, and never ask her any questions about her massive cactus collection. Strangely, I didn’t find our sessions helpful.
I had a complete block against sharing any of my internal world with this woman and realised if I wanted to get on top of it, I would need to do it alone. I started by trying to understand myself better. I began by drawing a timeline of my life to work out what order it was all in. This might seem like a really strange statement, but my life felt so lost to me, so confused, I was not sure which bits went where. To help with my memory I gathered my childhood and teenage diaries, photos, and all the official paperwork I had collected (police/hospital/school etc) and made a kind of map. I was incredibly shocked and distressed to re-read my teenage diaries and discover that the world I thought I had existed in was actually only one part of my life. Years of entries from people I didn’t know littered my diaries. There were drawings and even letters to me. Some in my handwriting, some not. I couldn’t cope with it, it was incredibly frightening. I was convinced I was seriously ill, more so than I had ever thought, and I felt threatened by what I can only describe as a menacing presence of these “others” who seemed to always have been lurking. I had no language to describe what I was experiencing. I didn’t even know what to search for online, so I kept it all to myself, and tried to keep drawing it.
As I drew out this timeline, I began adding things that I knew were true, but I had never really thought about. At particular junctures on my timeline I included the birth or death of separate parts of myself. Some of these directly correlated with severe traumas, others didn’t. Some of these parts felt very much like younger versions of me, some didn’t. I wasn’t sure what it was I had created, and I felt as if I wasn’t really supposed to know, so I folded it up into a diary and left it, but it didn’t go away. It was as if a door had been opened and the voices chatted away to me, starting to describe a little about the structure I had inside. Their presence and knowledge was strangely familiar. The best description I have is of listening to a song you haven’t heard or thought about in years, and immediately remembering the lyrics and how much you used to love it. It felt a little like that.
The psychologist retired during our sessions together. I was transferred to a new therapist and (fortunately) allowed to start again from scratch. While this new therapist was not autism friendly, repeatedly misquoted me in my notes, and thought I was joking about being suicidal, she was at least willing to listen to me, and dispensed with the masses of mood questionnaires. Over a period of time, I developed a strong enough relationship with her to start to open up about some of the more difficult things I had never spoken about before. In one of our last sessions, I brought some of my teenage diaries and the timeline I had drawn out and, after bracing myself, I told her that I had other people living inside me. I wasn’t sure what to expect. I had visions of her leaping on me, sedating me and dragging me away, or jumping out of her chair with a crucifix and holy water screaming “SHE-DEVIL!”. Mostly I was worried she would laugh at me or tell me she thought I was lying. Thankfully, she didn’t do any of these things. She picked up the diaries and the timeline I had given her, and looked at them for a while, eventually asking me why I hadn’t brought this up sooner. There was a definite implication that she thought I was trying to squeeze more sessions out of her, but I think primarily she was just frustrated that I had taken so long to tell her. After telling me that this was by no means an unusual experience, she got up and went to her computer, printing me out some pages from Mind’s website on “dissociative disorders”. She told me what I was experiencing was “dissociation”. Finally, I had the language to describe my experiences. When I felt like I was not real, when I felt as if everything around me was not real, when I disappeared into my head or the world disappeared into me, when I heard other people talking inside my head, when I blacked out for hours at a time, when things arrived in the post I had no memory of buying, or I found notes I had no memory of writing… I was dissociating. This was huge. This was bigger than huge; this was fucking massive. Or at least I thought it was until I left the appointment, went home and googled dissociative identity disorder. I discovered a whole world of people with this diagnosis online, and really struggled to identify with the experiences they were sharing. There was an entire language surrounding dissociation. A culture. There were blogs talking about ritualistic abuse and YouTube videos of people displaying dramatic switches between “alters”… This wasn’t me.
I found it hard to understand what I was seeing and reading. I wanted nothing more than to hide myself. That was the goal of my life, to be hidden. In developing my understanding of these other parts of myself, I had realised that to some extent they existed to help me do that. I needed to be safe, I needed to be hidden, I needed to be secret. But here were these people “flaunting” themselves and their dissociation. In the beginning I found that hard. I didn’t identify with what I was being told was wrong with me. I must have something else, dissociation couldn’t be the answer because I didn’t have dramatic shifts in personality; people around me did not notice that I had blacked out and some other part of me had surfaced; my parts didn’t have great long backstories, or strange accents, or complex relationships with each other; everything about me was too subtle, too quiet, too hidden to be a dissociative disorder.
I became quite unwell around this time. The world inside me was opening up too rapidly for me to know how to cope with it, and almost immediately after being told I likely had a dissociative disorder, I was discharged from mental health services with no other support. I started experiencing intense, daily flashbacks, my parts became louder and more intrusive, I was starting to injure myself during blackouts, and my dissociation had now become very visible to my partner. I found myself back under the care of mental health services, moving through a long-winded process of clinicians, assessments, diagnoses, and medications. I became more and more unwell during this time and was forced to take leave from university.
I eventually ended up being passed to a clinician who “specialised” in dissociation. By “specialised” I can only assume she had watched loads of old movies with “multiple personality disorder” characters in them, because her actual understanding of my experiences was completely bizarre. The sudden shift from a psychiatrist who did not want to talk about dissociation, to a self-described “expert” in dissociation was difficult. I had not revealed any of the subtleties of my internal world to the psychiatrist, and despite wanting help to understand myself and reduce the chaos in my head, I was kind of relieved at his lack of interest. At least I was still safe. The “specialist” was a whole other story and from day one attempted to tease out and map all my parts, which she kept referring to as “alters” despite my protests. When I said I didn’t want to talk about them, she refused to accept it, stating that without a proper formulation, I could never get better. When I said they didn’t have names, she named them herself. When I said I couldn’t command or control them, she didn’t hear me, demanding I bring them to appointments and seat them at a conference table in my head (whatever the fuck that means). When I didn’t want to reveal them or describe them, she speculated wildly (and incorrectly) about their feelings, thoughts, and motives. While I struggled to understand the reason they existed, she insisted she knew the reason for each. Each appointment felt like she was taking a cheese grater to my brain. I became more and more unwell. Inside, I had bypassed chaos and was in absolute meltdown. My carefully constructed world of secrecy and safety had been destroyed, as the psychologist fired off letters detailing everything I had ever hidden, to what felt like every NHS secretary in the country. Her attempts at renaming and reconstructing my parts did not “create” or build on their existence, rather, they felt so attacked and unsafe, my relationship with myself broke down. I realised the only way I could escape from what my life had become was to kill myself. It was a really dark time.
I’ve read a lot of the theories about iatrogenic DID (i.e. DID induced/created by a therapist) and have found it interesting to have been in a situation with a clinician who would most definitely fulfil the clinician description in these theories. She was overzealous, desperate to impose her own ideas onto me, and would get very annoyed if I didn’t follow her lead. What I noticed, however, was that I was not susceptible to her rewriting my experiences. If what she said did not fit (basically everything), it was rejected. Over the many months of appointments with this person, other than me feeling more and more unwell, my presentation did not change. I did not develop new parts, the ones which already existed did not change in character, nor did they accept the (frankly appalling) names she gave them. I was not, as so many people seem to think, a malleable lump of clay ready to be squashed into whatever shape she had in mind. Over the many years I have been aware of their existence, the one thing I can say quite confidently about my parts is that they are frightfully consistent. They may not all be whole people, some are merely fragments of a person, or time stamps of a trauma, but they remain the same in character, temperament, and behaviour. They have existed within me for over 20 years, created by my own mind, in an incredible time of need.
My relationship with them is very difficult. I do not want them to exist, because I do not want to be this person, nor do I want to acknowledge why they came into existence. That they do is exist is only a reminder that I was abused, something I wish with all my heart was not true. Simultaneously, they create deep feelings of guilt within me, as I honestly feel on occasion that they are separate people to me, and I feel as though I left them to experience the abuse meant for me, so that I could be protected. This is a massive internal struggle which is very hard to articulate. I hate myself for leaving them to be abused, for not protecting them. But I recognise on another level that they are just me, no-one else, and I was the person being abused. I sometimes go round and round in this circle multiple times a day, trying to work it out. I don’t think there is an answer. Some things are just too awful for a person to be able to live with peacefully. What happened to them, what happened to me, was unspeakable. I try and tell myself that the steps I took in my mind to shield myself from what was happening were just amazing. I try and tell myself that what I am experiencing is real. I try and tell myself that I am not lying. I try… but it’s hard, and casually expressed sentiments of disbelief from mental health professionals make it so much harder.
There is a place for academia, for research, for studying these phenomenon, for trying to come up with effective ways to support people. I recognise the importance of this, and actually hope to go into research myself, when I eventually finish my degree. What I don't think there is a place for, however, is casual public speculation by so-called professionals, particularly when it comes to conditions they have not experienced, nor even specialise in. I find it really quite repulsive that "professionals" believe their status as such gives them the authority to openly dismiss people's experiences in this manner. This is my life. I live it every day. It is not a lie, an exaggeration, or theoretical - nor was it created in a therapy room. I exist, with or without your approval.