Living with us isn't easy. A survivor's perspective on DID.

Living with DID (Dissociative Identity Disorder) : A Survivors perspective.

Living with DID is sometimes, in fact most of the time, not easy.

I had a formulation of DID late in life, in fact two years ago; I am 60. I have been in therapy in one form or another for 25 years or more. I have no head count or names to my ‘alters’ but I know they exist. My therapist and my wife have both noticed them as have I over the years.

I and we have an ‘adult’ operating side but a child running alongside me shouting “Look at me!”  Another child runs on the opposite side shouting “Don’t let them hurt me again!” as I try to operate in the adult world.

I live in an almost permanent state of dysthymia. I rarely smile as smiles can be ‘taken away’.  Someone will ask “What you are smiling for?” which I take as a criticism and an attack; so I stop smiling. I describe myself as agelastic.

I tell someone or something to “Fuck off” at regular intervals throughout my day; this happens for no apparent reason. It borders on Tourette’s sometimes, though not as intrusive and socially painful as that condition can be.  I am not sure who or what I am telling to do so; perhaps the people who have hurt me need to be told to go away.  I also challenge someone regularly with “Come on then!”

My days seem to evaporate although I am too aware of the time of the day; it is as though I have to be somewhere.

I have an uncomfortable and uncontrollable fear of being late for an appointment and I cannot stand it when others are late. I have tried to challenge this by leaving things as late as possible but these challenges only result in us becoming overly anxious and angry.

I have the radio on, but rarely hear it: I don’t hear the words or music it is a blur of comforting sound and noise; there is someone else there with me.

I have long periods of dissociation or dissociative behaviour. We are not there. This is when my life becomes a blur; that can be also when I am ‘adult’ mode too. The ‘adult’ can operate when we need it to but we are never fully there.

I get flashbacks of people’s faces and things they have said and done. There are huge parts of my life that remain blank; I simply cannot remember a thing about them. I must have been there; but I really wasn’t. Flashbacks to my abuse sometimes happen, usually as a nightmare. Those flashbacks creep up on me, I can think of no trigger that engenders them, not alcohol nor stress or other any other life interventions. When I have nightmares I usually end them screaming or thrashing about defending myself: I can do that now; I am big. I am six foot four and eighteen stone. I can defend myself now. “Come on then!”

I have been an alcoholic and I still consider myself an alcoholic but the effects of alcohol are shamanic; it frees my inner people to be able to laugh and dance and smile. My thoughts race and so do my words.

My ‘alters’ sometimes come out talking in accents; I talk in a south African accent, then slip into a heavy Jamaican accent and then go ‘posh’ and BBC received, sometimes I slip into torrents of swearing in rhyme usually to the tune of a song that irritates me. I extemporise the lyrics and can never remember them no matter how ‘good’ they sounded. No one hears me do this. It is my secret. Someone will take away the pleasure of doing it by judging it.

I frequently express anger inappropriately, often tantrum like and uncontrollable. Often this anger is childlike and abusive to my partner. I know I can trust her not to walk away from me.

Part of me often asks what sex feels like in that childlike way that teenagers ask.  But how would I know?  I haven’t been there for most if not all of the sex that I have had in my life.

I am ‘comfortable’ in my discomfort. It is a discomfort that I know well and I am ‘happy’ being in.  

I am rarely ‘happy’ if at all, I don’t know the meaning of the word as I have rarely experienced true ‘happiness’ and anyway, someone will snatch that feeling, that happiness away from us.

As a child I had no safe place: I would always be sought out and found. I still have no safe places. I do not call the houses I have lived in ‘home’: I will never have a home. I am told home is a place of safety. We have yet to find that safety.

I often cover our head with the blankets/the duvet, then invoke the swirling colours in my brain and come out of our body. I do that often. I did that as a child. It still keeps me safe and detached from the reality of life. A life I do not hold dear.

I often have a crisis of perspective when I am in my bed; things seem much bigger than they really are: the duvet seems huge and fat above my head, the room is much larger than it really is. My wife’s body next to me sometimes seems huge and ‘adult’. I can block things out using my hand: like light fittings and doorway by putting my hand across the item I want to block I can make it disappear from my view, in that childlike way of ‘I can’t see it (you) so it (you) can’t see me’.

I firmly believe that I have no true ‘adult’ in us. We struggle with life and its intricacies and realities.

I regularly text my wife and ask her if I should be doing ‘something’. I have huge gaps in my memory. My short term memory is often not capable of a nanosecond of retention. I can forget things almost as soon as they happen. (I am struggling with vocabulary typing this!) This happens with films, plays and novels. I am thankful for the ability to roll back time, as it were, by rewinding or turning back pages to see what I have missed.  This can be, and very often is, debilitating in my everyday life. I ‘know’ my wife gets annoyed when I cannot remember simple things. I cannot blame her. She will remind me of the forgotten thing.  This is not true of others they can and do berate me for this failure to remember simple things as they see them.

I live a very lonely life. I ‘know’ people but have no true friends. I trust no-one not even my wife. I have trusted people and they have abused that trust.

I use social media but have to watch out for triggers or things that cause my anger to rise. I very often misread posts; my reading of them can be literal and I do miss the joke or direction of the tweet or post. This has led me into arguments and loss of followers and ‘friends’. I have been told that I have an atypical reading of most things.

I cannot ‘read’ people correctly and form attachments quite quickly and sometimes these attachments are inappropriate.

I live a life of patterns and safety:  I cannot do the things many people do without thinking. It takes a lot of courage for me to have a coffee in a café. It takes courage for me to do something as simple as buy an ice cream. I have to be able to control my world. This is often at the expense of others enjoyment or making them feel uncomfortable in my vehement rejection of an off the cuff suggestion.

I take lonely walks often on a route that I am familiar with. I cannot deviate from a route I have planned in my head. Little, if anything, is extemporised. That is a terrifying thought. I need to plan and for those plans to be adhered too.

I am very protective of my possessions and become easily annoyed should anything get damaged or destroyed. This is not within the ‘normal’ bounds that others feel for their things; it is exaggerated and overly protective. I have to control my environment and the things I own and, I suspect, the people I know.

Every day we feel detached and not part of the world, or not part of the environment we are in. I, or most of the time we, can be in a busy room and still not be in the room. My body is there but we are not.

Living with us is not easy.

Living with us is hard.