Getting my Diagnosis part 2

This is one of a series of posts about life pre and post diagnosis, the early years

 

image

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.

image

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.

image

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

Getting My Diagnosis of Dissociative Identity Disorder

OneĀ of a series of posts about life pre and post diagnosis -the early years.

 

 

Diagnosis part 1image

By the time I was told that the professionals treating me thought I had a dissociative disorder I had spent years in the psychiatric system. I had been misdiagnosed and treated in some awful situations and I was taking a multitude of medication. Medication that didn’t seem to make any changes to the symptoms I appeared to have. I had come to learn that psychiatrists liked to prescribe medication on top of medication and especially when you are a patient in hospital.

I knew I was losing time, I felt like I existed in a state of confusion and chaos and I thought people were lying to me. They said I had done things I knew I hadn’t and would tell me things I had supposedly said which I knew I hadn’t, except I now realise a part of me most probably did.

It was 2008 and I was stuck in a secure psychiatric facility, I was detained on a Mental Health Act section 3, in fact I’d been in hospital non stop for over 16months. I really had no idea what or who I was anymore and I didn’t realise that Dissociative Disorders existed.

The psychological team treating me had done a number of test on me already, these included a DES II form, that’s the Dissociative experiences Scale version 2, the Multidimensional Inventory of Dissociation (MID)and a couple of others tests that highlighted dissociative markers. Apparently; though I didn’t know at the time, they had seen me switching from one alter to another and back again.

The dissociative experiences scale is a questionnaire which I had to complete, and it’s a useful screening tool for DID but is not a diagnostic test. It includes a subset of items which can be used to assess depersonalization and derealization. (Kennedy et al (2013)) It gives professionals an indication of those people who are potentially more likely to dissociate.

The MID was designed to diagnose all dissociative disorders by comprehensively assessing the entire domain of dissociative phenomena, including PTSD, severe borderline personality disorder and all dissociative disorders (Chu (2011)).

image

 

My psychiatrist at the time didn’t believe in dissociative disorders and so she denied their initial request for a more formal assessment. But I was fighting to be removed from my section and was due to have my section renewed in just a couple of months time. I had already been told by the private facility treating me that my section was going to be renewed, no matter what happened or how I was presenting medically at the time.

I mentioned in passing to my solicitor (legal representative) that there was a disagreement between the psychologists and psychiatrist treating me. I mentioned that the psychologist had suggested I might have a dissociative disorder and I soon realised he like me had no idea what a dissociative disorder was. He had already decided I need to be assessed by a forensic psychologist ahead of my tribunal and the potential renewal of my Section 3.

So he arranged for a doctor to come and assess me fully and at the same time to check if I had a dissociative disorder. I told him I wouldn’t believe any new diagnosis because I had so many and I didn’t feel they meant anything. So eventually it was agreed I would see two different professionals who would assess me independently of one another.

These assessments took place over a month and as I couldn’t just walk out of the hospital and go and see these people, the professionals came to me. The assessments involved a multitude of tests and appointments, the forensic psychologist decided to visit me for what was 2 full days. He undertook every psychometric test that I think exists. It went on and on and I felt exhausted physically and emotionally after his visits.

There were tests involving papers to complete, multitudes of verbal questions and even picture of dots and shapes to describe. This doctor was actually quite assertive, so he wanted answers instantly it felt and I learnt later that he asked some questions more than once. I had no idea at the time this had happened and so was surprised when I found out at a later date. He duly made notes of everything and seemed to never need a break and he watched me like a hawk the whole time. He undertook tests on my memory and my recall and it felt like I was in a experiment lab being analysed from the inside out.

image

 

One of the tests he undertook was the Structured Clinical Interview for DSM-IV Dissociative Disorder (SCID-D) test which involved a multitude of questions, he duly marked down my answers and the results of his observations of me. The SCID-D is a highly structured interview that discriminates among various DSM diagnoses. The test was formulated by Dr. M. Steinberg and it’s regarded as one of the key tests for Dissociative Disorders.

The second professional I saw was a specialist in Dissociative Disorders he used the DES-II and the SCID-D. His appointments were less formalised and more relaxed and he had spoken to me on the phone ahead of coming to see me.

Both were professionals in their field and highly skilled and both compiled lengthy reports about me which I still hold onto to this day. The results of all these tests were that I definitely had Dissociative Identity Disorder, I wasn’t mad, I wasn’t dangerous, in fact I needed to leave the confines of the secure unit and live in the community. They also recommended that I needed long term talking therapy from someone skilled in treating people with dissociative disorders. Both had realised that I had become partially institutionalised by the long term hospitalisation that had been forced upon me and that needed to be addressed as well and they gave recommendations about that.

The two reports do differ in part as the forensic psychologist contains more detail on certain matters that a Mental Health Act Tribunal would need. Yet they both independent of one another after days of tests agreed on my diagnosis, a diagnosis that I found scary, bewildering and confusing in it’s own right.

To be continued……

Copyright DID Dispatches 2014

References:
Chu, James A. (2011). Rebuilding shattered lives: Treating complex PTSD and dissociative disorders, appendix 3. Wiley.

Kennedy, Fiona, Helen Kennerley, and David Pearson, eds. (2013). Cognitive Behavioural Approaches to the Understanding and Treatment of Dissociation. Routledge.