MY EXPERIENCE OF LIVING WITH DISSOCIATIVE IDENTITY DISORDER

I am indebted to a lovely lady that I have known for quite a few years for this brave account. She brought it to me, asking me to edit it as longer than I had asked. I read through what she had written and refused to change a single word. This is a piece written from the heart and will give you a better understanding of what it is like to live with Dissociative Identity Disorder (DID). I have made the podcast recording on her behalf.

I had a happy, ordinary childhood.

I loved school. I loved playing out with my friends. I loved my family.

In every way, a standard, working class upbringing.

Fast-forward thirty-five years or so. I have spent the last eight years in private therapy. I have recently been referred to the secondary care Recovery Team for a psychological assessment after which I should receive two years of therapy on the NHS. Last year I was diagnosed as having Dissociative Identity Disorder. As a result of my ill health I have just lost my job as a teacher working with children on the Autistic Spectrum - a job that I loved and was good at. And everything that I thought I knew about my life has been turned on its head.

Despite my beliefs that I had an ordinary, happy upbringing, there have always been clues to the contrary. Problems really began for me when I met my husband; a wonderful, loving, caring man. However, being 21 years older than me and with two daughters - one who was 15 when we got together and one 25 - the relationship didn’t come without challenges. My anger seemed totally out of control. Luckily for us we were recommended a very skilled psychotherapist and things improved drastically. At the end of the period of counselling, I was asked if I would like to continue seeing her for my symptoms of stress, anxiety, depression, phobias and night terrors. At the time I had normalised these symptoms and I can remember being fairly blasé about continuing - though something in me wanted to do so.

We began work together and some patterns emerged. One of which was my need to keep busy. I never had any free time. Again, this seemed completely normal to me - it was how I had always been. We discussed my upbringing.  A few things began to come out that I had normalised. I began to see through her eyes how some of these things were maybe not so normal after all. That perhaps babies shouldn’t be left in cupboards whilst crying because their mum couldn’t handle it and went to a neighbours. That perhaps parents who were rowing all the time and throwing things at each other and punching holes in doors could be scary for a young child.

Then a very strange thing happened overnight. I felt a feeling; a dreadful, scary confusing feeling. At first I didn’t really know what it was, I was just weepy, unsettled and really wanted to see my therapist. Then I began to recognise it as something I had experienced before. I wanted her to be my mum. I needed her desperately. Being without her was torture. I began to read about what I was feeling and was astonished to find that it seemed to be a relatively common thing in therapy. I was terrified of telling her - what if she said she needed to refer me to someone else - that she couldn’t handle me being such a freak. But all the advice online seemed to be that this was something you should tell the therapist. I can look back now at telling her how I was feeling and I really feel proud of my bravery in doing so. And thank God she didn’t abandon me or make me feel like a freak.

This attachment or ‘transference’ dramatically altered the course of the therapy. The therapy became more about managing the feelings and unmet needs that I had and grieving the idealised mummy that I never had. It became about my relationship with my mum. It was unbelievably painful - like nothing I have ever experienced before. It was complicated and messy and seemed to make everything ten times worse. To help me, I kept a journal. Looking back at the journal at that time is really interesting as I would go to therapy, it would open up these deep wounds and I would grieve for a few days, then completely shut it down. I would go back to being the professional, cold, unfeeling person that I had always felt I was. Not this needy, whinging cry-baby who I hated. In fact there is an entry in the journal where I have looked back at what I had written in the week and commented that it was as if it had been written by another person. It was as if I spent half the week as one person and half the week as another.

This other self felt very childlike. There were times in the therapy session when I would behave completely out of character for me. One session I remember in particular I threw myself on the floor  and lay there in protest at something. Part of me was thinking ‘what on earth are you doing?’ but it seemed as if I had no choice. My therapist treated me as though I was a small child having a tantrum and wouldn’t take me on.

Other times I felt very cuddly and like the therapist was my mummy. If only I had been small enough to get on her knee! Yet this was the person who originally thought all this ‘inner-child’ business in therapy was a load of old bollocks. And that part of me, the cynical, cut off, cold, unfeeling part (which I am grateful to now) hated this child part with a passion. It took a lot of work in therapy for me to accept this part of myself, but once I did, that’s when the memories started to come back.

One session in 2014 I randomly decided to tell my therapist about a shaming incident when I went to the doctors as a small child. And it was that small child part of me with the attachment to the therapist that was talking to her that day. It made a difference, because that child part of me was not cut off from her feelings about it. In telling the therapist, she (I) felt the shame attached to it that I had never felt before. It opened a Pandora’s box. The doctor had used a particular word and in hearing my therapist speak the word back to me I had a flashback. I didn’t recognise it as such at the time because films etc depict them as visual. I now know that they can be any sensory input, but they feel as if the trauma is happening now. In my case, everything went black, I felt very small and utterly terrified. I started screaming and screaming and crying. My therapist spent time grounding me - getting me back into the here and now. I was shaken and confused - shaking and my teeth chattering. When I got home later, I couldn’t sleep for fear that it might happen again.

Of course there was a while when I thought the doctor had abused me. But then began to creep into my consciousness another awful thought - that couldn't be true, surely - no, that perhaps it wasn’t the doctor, or wasn’t just the doctor. What if it had been my dad?

I spent a few months blocking out this idea and dismissing it, whilst clues began to hammer at my consciousness. Why was it that I couldn’t bear being touched? Why did I freak out that time my dad tried to touch my shoulder? Why was he always so inappropriate with me? Why did I avoid my parents so much? Why did I have this terror of them knowing anything personal about me? What if our family wasn’t normal? What if other families were comfortable around each other? Why would I panic if I rang up and my mum was out? Why, when my therapist had asked me right at the outset of therapy if I had ever been sexually abused did I tell her, ‘I don’t know.’ The thought of my dad went through my head, and was dismissed as quickly. How could I think such an awful thing about my dad? When she asked me gently, why had I said that, I panicked and said I didn’t know.

I realised that I had been sexually abused by my dad. I had no concrete memories for the abuse -they came in a different form. I started to get symptoms of PTSD. Hypervigilance, panic at being touched, body memories - gagging when brushing my teeth, spasms in my shoulder blade, insomnia, constant night terrors and nightmares when I did sleep, spaced out, numb, confused. Detailed childhood memories of seemingly inconsequential details. I would space out in therapy sessions - my therapist asking me where I had gone. I never knew. It affected me at work - I began to have temper tantrums, self-harming by scratching my arms and legs, and crying inconsolably. Unsurprisingly I ended up off work. The GP I saw to sign me off saw it as a child protection issue when I told her I thought I had been abused by my dad. That if I didn’t tell my sister (who had two children) she would be forced to take it to social services.

The terror that I felt of my secret being finally out was unbelievable. I didn’t know how I would tell my sister. We had never been able to tell each other anything? What if she didn’t believe me? What if she went and told my dad? What if she stopped me seeing my nephew and niece? But I knew that even though I didn’t have the concrete memories, I couldn't live with myself if dad harmed either of them. Luckily for me she did believe me, and supported me. But now I had to confront my parents - it couldn’t be kept a secret any longer. My parents would want to know why my sister was keeping the children from them. It was the hardest, most scariest thing I have ever done. At first mum believed me. Dad attempted suicide later on that night - he never denied it. He kept saying ‘how can this be?’ and ‘this can’t be right’. Things then began to corroborate what I had thought about him - dodgy searches were found on his computer - the police became involved - thought it wasn't enough to prosecute. He has a previous conviction for a sexual assault as a teenager. He had made a series of ‘funny’ phone calls to my mum’s best friend. Tales of how he used to ‘beat me’ - which I have no memory of either. My grandparents (his parents) believed me until dad got hold of them and made out I had ‘false memory syndrome’. Mum stayed with him. I could tell that she believed me, but she found it too difficult to leave him and didn’t want to believe it. So I lost most of my family overnight. Thankfully, I still have the support of my sister and brother-in-law. Friends believed me and have been incredibly supportive. I don’t know how I would have managed without my very long-suffering, amazing husband.

In September 2016 I was diagnosed as having Dissociative Identity Disorder. This is what used to be known as Multiple Personality Disorder - a rather misleading name as really we don’t have ‘Multiple’ personalities. Instead, it is one person, split into dissociated parts.

DID (as it is known in short) is simply a creative survival mechanism for coping with overwhelming and chronic childhood trauma. It only occurs in childhood as children have the ability to fantasise and are therefore able to create alternate identities to cope with the trauma for them. It is the end of a spectrum of disorders caused by trauma, including Post-Traumatic Stress Disorder. Everyone with DID will experience it differently - no two ‘systems’ will be the same.

People with DID have parts of the personality that were created not to know about the trauma. These parts are sometimes referred to as ‘Apparently Normal Parts’. And that is a very good term for them. These parts of my personality are the ones that I show to the world - the ones that people see as ‘me’ and my ‘host’ part is an ANP. The host being the part that occupies the body most of the time.

We also have ‘Emotional Personalities’ . These personalities are stuck in the past - not knowing that the trauma is over. When people with DID ‘switch’ personalities; they sometimes have amnesia for what that part had done whilst they were out. As DID is a disorder built around the need for denial, it is possible to have amnesia for the amnesia - not to realise that a switch has taken place at all. In my case I believe that for most of the time when I switch I am ‘co-conscious’ which means I am aware of what the personality (or alter as they are commonly known) gets up to whilst they are out. However I seem to still think as ‘me’. An example of this is when I switched to a very angry part whilst out with friends last year. It is unusual for this to happen - most people never see my alters - they tend only to appear when they feel safe - with my husband or therapist. For whatever reason, on this day, something triggered this part to take over. I was unable to speak, but was seething inside. Yet my ‘Apparently Normal Part’  (ANP) was trying to figure out what to do. I had the feelings ad actions of the alter, but most of my thoughts were from my ANP. I worked out that even though I couldn’t speak, I might be able to write. So when I got the restaurant with my friends I wrote them a note to say that I was really triggered and not me and would they carry on without me. They said they had noticed!

I have child parts and teenage parts that I am aware of, but I am only just getting to know what is going on inside for me and I’m not sure I can tell them all apart just yet. I have a little girl part who is about 3 years old and I can tell when she's around because I suck my thumb and rub my nose and I am quite calm. She is very shy and can’t usually speak, or if she does speak, she has to whisper. She told me her name. There is the child who first came out in therapy. We named her and she seemed to like it, so it’s stuck. She is about 7 years old. She is the one with all the love and is very attached to our therapist as a mother figure. She loves stories and sweeties and she likes to wear very girly clothing. She likes to draw pictures with crayon. There is a part that holds all the rage. I am not too sure how old she is. Underneath all the rage I think she is extremely frightened. There's a cheeky one - she shocks me as she is the only one who will tell fibs our therapist to make her laugh - the rest of us are deadly honest. It’s really strange to hear myself lying and I will own up as soon as I’m ‘back’. She sometimes pretends she is one of the others as well. There are a couple of teenagers too. One is typically sulky and gets a bit frustrated and stamps her feet. The other holds a tremendous amount of unbearable emotional pain. I have’t ever switched to her for long as I don’t think we would last. She self-harms and screams and cries and throws herself on the floor. There is another ANP that is very subtly different to me. Generally I have very little energy or motivation and struggle to do any household chores. However I can tell when this other part takes over as I suddenly become extremely domesticated which is a shock for anyone who knows me - especially my husband! I’ve nick-named her ‘Mary Berry’ for the time being as she likes to bake as well - something my other self can’t bear! She's really useful to have around, but unfortunately we don’t see her often enough as I think my host self knows we need a lot of rest.

But for most people, most of the time, you would never know there was anything wrong with me. And really, you’d be right - as this part hasn’t been abused. This part managed to go to college and get a degree and teach for 20 years and get married and have friends and a ‘normal life’. However, my brain knows now is a good time to heal and my dissociative barriers are beginning to break down. It’s not a lot like it’s portrayed in the movies - its a ’disorder of hiddenness’.​

BUT - It is a treatable disorder. The ISSTD (International Society for the Study of Trauma and Dissociation) treatment guidelines are for a three phase approach; namely:

1. Establishing safety, stabilization, and symptom reduction;

2. Confronting, working through, and integrating traumatic memories; and

3. Identity integration and rehabilitation.

This is usually best done in a long-term 1:1 outpatient therapy setting.

I have found pods to be a very helpful organisation.

 

FINALLY - I refer you back to the picture at the top of what I have written. It resonated for me.

Podcast - Press play to listen or download it here:

Comments

Wow! Amazing blog..very brave and truly inspirational.
How brave of you to help us to understand DID better. Good luck in your healing journey.
What a brave and honest account of your struggles you have given here. You are such a good writer too. DID was not something I knew much about but you really have explained it so well. I hope you are able to continue your journey with the strength and determination you have shown so far
I have passed the messages on to the writer. Thanks for taking the time and effort to comment. I appreciate it - and I am sure it means a lot to her too! Dee

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