It’s scary to think you’ve ‘gone mad’. It’s scary to think you have some serious, incurable ‘mental illness’. It’s scary to not understand what on earth is going on in your brain. And perhaps what’s even scarier is finding out that what is ‘wrong’ with you has a name: dissociative identity disorder.
I applied, with Emmott Snell’s assistance, for CICA. This is the compensation that the government pays out to victims of crime, administrated by the Criminal Injuries Compensation Authority.
In the end I was unsuccessful, but the experience was full of learning that may be helpful to others, and so I share it here for that purpose.
‘I’m not seeing a doctor!’ I insisted with a look on my face that was intended to end the debate once and for all. As far as I was concerned, it was simple: I wasn’t going to the hospital, walk-in centre or GP surgery, because I couldn’t go. I couldn’t cope with going. Such was my abject terror that, unless it was a matter of life or death, I avoided all things medical.
The problem? This was rapidly becoming a matter of life and death.
… it has really struck me how many people with a history of complex and severe trauma cannot get any help whatsoever via the NHS. Many are passed from pillar to post, either being told that they do not meet the criteria to receive services (they are not quite suicidal/traumatised/distressed/non-functioning enough) or that they exceed the criteria (they are too complex/suicidal/traumatised). This leaves people feeling understandably ashamed, powerless and frustrated…
It might have been ‘just a routine blood test’ but that didn’t stop me passing out. Again.
From a teenager through into adulthood, even the word ‘medical’ could render me light-headed. I couldn’t bear the sight of blood, I couldn’t even hear descriptions of blood; hospitals and doctors and dentists and needles were meticulously avoided. Someone once described to me an accident they’d had involving a mangled leg, and within 5 seconds I was starting to feel faint. Within ten I was sweating and shaking. Within fifteen I was unconscious in a heap on the floor.
For a long time I didn’t understand why I was such a ‘wuss’, as I saw it.
You’ve come a long way. Misdiagnoses, mistreatment, maltreatment even—but eventually you’re here. You’ve found a therapist willing to work with you—either privately or on the NHS—and so now you’re expecting it just to happen. Right? Wrong!
If you don’t have an LPA, many decisions will be taken on your behalf either by medical professionals or your next of kin or relatives. In situations where you have a domestically violent partner or spouse, or abusive parents, this could put you in a very worrying situation.
Once we understand dissociation as a logical response to overwhelming trauma, it stops being so dramatic and different, and the person suffering dissociation stops being ‘complex’ and ‘bizarre’ too. There is nothing bizarre about dissociative disorders—what is bizarre is how some people can be so badly mistreated that they end up with a dissociative disorder.
Someone who has dissociative identity disorder may have distinct, coherent identities that are able to assume control of their behaviour and thought.
What medications should be used in the treatment of dissociative identity disorder? This fact sheet takes guidance from the ISSTD’s Treatment Guidelines for DID.
How should dissociative identity disorder be treated? What do the guidelines say, and who produces them?
There are many ways to describe dissociation, and we look here at dissociation as it pertains to dissociative identity disorder and trauma.
Dissociative identity disorder is a creative survival mechanism for coping with overwhelming and chronic childhood trauma.
Diagnosis of dissociative disorders is by no means straightforward, mainly due to a lack of training and knowledge. The main diagnostic criteria can be found in the DSM-5 and this article explains how diagnosis is made.
There are a number of diagnostic tools available for assessing dissociative disorders. This article lists the principle ones.
Dissociative disorders appear as diagnostic categorisations in both the American-based DSM-5 produced by the American Psychological Association (APA, 2013), and the other ‘diagnostic’ bible used more widely in Europe, the World Health Organisation’s ICD-10.
DDNOS is seen by many people as a ‘not yet’ or ‘a not quite’ version of dissociative identity disorder and although it is supposed to be a ‘residual category’ and only given to a few people, in fact the vast majority of people diagnosed with a dissociative disorder fall into this category.
Who should pay for treatment for survivors of abuse who have gone on to develop a dissociative disorder? For many conditions the expectation would be that help would be available on the NHS, but this is rarely the case for conditions arising from trauma.