This is one of a series of posts about life pre and post diagnosis, the early years
Diagnosis part 2
The two medical professionals who assessed me and diagnosed me with Dissociative Identity Disorder produced rather lengthy reports. As I stated before in my blog ‘Getting My Diagnosis of Dissociative Identity Disorder’ their reports differed in that the forensic psychologists report covered far more detail, he had for instance assessed my level of risk. The reality was his report was potentially going to be used at a Mental Health Act Tribunal.
But I was surprised that the two experts came to the same findings in respect of my diagnosis of D.I.D, yet they did not know about each other’s assessment of me and the reports were written independently of one another. Their scores from the Structured Clinical Interview for DSM-V Dissociative Disorder (SCID-D) were within a point of each other and they had highlighted things which I really had no idea or understanding about.
At the time I was in a locked unit and had no internet access, in truth I felt lucky to have phone access as this wasn’t always the case. So trying to understand terms such as Dissociative Fugue or Derealisation was complex and difficult.
I also found the information in their reports hard to read as suddenly staring me in the face was the evidence that I dissociate. I had no concept of D.I.D and these two professionals both had to explain to me verbally after their assessments what D.I.D was. I was surprised that they had seen me switch alters as I had no concept of this, I just thought I had got tired and lost time and I was by now use to losing chunks of time.
In between their assessments and their reports the units psychiatrist decided she better assess me as well, so I was assessed using the SCID-D for a third time. I had no idea what these people expected from me but my answers were on each case as honest as I could be. I remember feeling cautious and looking back if anything I probably understated my symptoms.
Unsurprisingly she also deemed I had D.I.D and suddenly changed her view of me, she wasn’t helpful about this and suddenly my losing time and I now realise switching, became something of an issue.
The staff in the unit found it difficult that I lost time, and suddenly I was treated more like a young child than the adult I was. If I wanted to go out on leave I was suddenly deemed a greater risk as I could switch alters. No one seemed to understand that I had been losing time and switching for ages and nothing had changed except I now had a label and we now knew why I lost time. Extra restrictions placed upon me as a result of a lack of their understanding and knowledge of dissociative disorders was frustrating and just another thing I had to deal with at what was a stressful time.
When I was informed I had Dissociative Identity Disorder I remember feeling perplexed and disbelieving, I called my daughter and said I thought the experts were bonkers. I explained what they had told me and the information their reports contained, I remember saying how perplexed I was that they claimed to have seen me switch.
My daughter didn’t seem so perplexed and said she thought it all made sense, it certainly made sense of her childhood. I recall being angry at her as I wanted her to support my view that the experts were wrong. I remember that as tears streamed down my face I hung up the phone saying everyone was wrong, I didn’t have other parts inside of me. Little did I realise that inside me was most probably in turmoil at my denial, denial which has featured so much in the 6 years since.
Eventually softly and gently she helped me to understand the things the experts had said, she helped me to come to terms with this new diagnosis and all that it entailed. Much of this was done via a telephone as I was in the unit 200 miles from home. One of the experts helped me too by allowing me to ask questions about the diagnosis, about losing time, and this thing they called switching. That help and support was invaluable and I will always be grateful for the time given to help me accept logically at least this diagnosis.
The medical opinions and their reports set out clear directions for my immediate and intermittent care, suggesting that I should be living back in the community. Shortly after these assessments were completed I was removed from my section and a few months later I left the secure unit behind.
Despite the turmoil of being held in an inappropriate secure unit I was I believe fortunate to have the assessments I did, the cost of which were well beyond my own financial means. The circumstances at that time meant legal aid funding paid for those assessments and provided me with an answer finally of my diagnosis. I had had so many inaccurate diagnoses and labels attached to me prior to this time as many others with D.I.D do too. Without being detained I would not have had the assessments funded, so I realise that out of that difficult experience came some good.
For many certainly here in the UK getting a diagnosis is not easy, financially undergoing the SCID-D is expensive especially if you have already been involved with Mental Health Services before. To have any other psychological or memory tests is also expensive and these are not always readily available through free healthcare systems such as the NHS. I’m certain these issues exist in other countries too, especially where no free healthcare exists.
My diagnosis came as a result of the darkest of times and initially I felt desperate and confused with the label and the reality of that diagnosis, which I believe I had tried so hard to deny for so long. Yet today I am grateful that I know the truth, the truth that I dissociate , that I am many parts living inside this body of mine. Parts who at times take control of me and who I am still getting to know.
Copyright DID Dispatches 2014