There is a great deal of information about Dissociative Identity Disorder (DID) which proliferate popular sites. They’re often easy to read, but generally created by the layman and therefore not necessarily accurate – for example look at the Yahoo Answers entries on DID. Some of these answers are great little snippets of what it’s like to live as a dissociative, some are just scary mis-information…
As with any subject, there is an inherent danger that the information available can be based on the person publishing information without realising that they don’t know anything about the subject (unconscious incompetence). On the Internet it’s easy to publish information in a credible format that is totally incorrect. A majority of this is done without malice, but it has the unfortunate result of spreading information that builds or reinforces stereotypes which harm the people directly affected by the issue.
So what is DID?
In order to have a diagnosis of DID, a person must meet the diagnostic criteria according to the DSM-IV-TR . It’s a nice list that would seem to be easily tick-able, but if you look at each it’s easy to see the issues –
- How do you define a “personality”?
- What is meant by “taking control”?
- How much personal information must be forgotten before it is “extensive”?
This is just from a quick glance at the criteria. Most mental health professionals have various issues with the validity of the diagnostic criteria and the diagnosis itself (Leonard, Brann & Tiller, 2005).
If the professionals have a problem agreeing on how to define and diagnose DID, how is the lay person meant to understand it?
In our experience, and many of the people with DID we have come to know, the criteria for DID don’t even begin to describe the reality of living as a dissociative. What is also evident is that DID is different for everyone, for some there is such a high level of functioning that there is little impact on their lives; for others DID and co-morbid disorders mean that daily functioning is affected to the point that 24 hour care is required.
So DID exists as a spectrum, which also means that each individual who is dissociative experiences a range of symptoms, challenges and benefits. The DSM-IV-TR is all about clustering symptoms together and labelling that cluster. Sometimes it works, sometimes it doesn’t.
As an interesting aside – in the DSM-IV-TR, DID is given the coding 300.14, while Post Traumatic Stress Disorder (PTSD) is 309.81 – a discussion for another day.
Personally I put PTSD and DID on a continuum or spectrum – one book we found interesting that described this continuum is The Haunted Self by Onno van der Hart, Ellert R. S. Nijenhuis, and Kathy Steele. It looks at the structural dissociation, which some people may find useful to explain or understand their experiences; some may not – as a indication of what perspective these writers take, have a look at Trauma-related structural dissociation of the personality. As with all writers in the dissociative field, there are questions raised about their credibility so use your analytical skills to evaluate the credibility of the information for yourself.
To bring DID down to the personal level, for us it means experiencing: flashbacks; time loss; hypovigilence; hypervigilence; sleeping problems; anxiety; fairly constant internal “noise”; wonder at the sight of anything “cute”; compartmentalisation of emotions; suicidal ideation; an eating disorder; derealisation; depersonalisation and no self-confidence or self-worth. This negatively effects our daily functioning to a large extent. But we’re also a sister, daughter, maintain a full-time job and have the privilege of feeding one spoilt cat.
In many ways, describing DID from the individuals perspective is the only way to help anyone understand the disorder. Our collective experiences which led to this diagnosis is individual to us. We can’t talk about others experiences – although we may identify with theirs and vice versa.
So I’m not saying that each person with DID is so different that there is nothing in common, but rather each person with any medical or mental health condition needs to be treated as an individual, not a label. Our different backgrounds have influenced how each person presents with DID – just as each person with any other medical or mental health problem will have different influences on how they present.
Each person with a physical or mental health problem deserves to be treated with appropriate respect, empathy and understanding. We happen to carry the label DID within our medical files, we don’t expect special treatment or attention because of that fact. We just request that people don’t judge us or project their issues with the diagnosis onto us. If we’re faking the disorder, don’t worry one or two of the independent psychiatrists and psychologists we’ve been assessed by over the last three years would have picked it up and directed us to alternative therapy techniques.
Please treat others as you would like to be treated – especially online where you don’t know the impact your words might have. Yes, this is a lesson I need to remember as well – I’m often too blunt.
Please note: I’ve only touched on the definitions and discussion of the DID diagnosis because these can be found at reputable sources such as Merck: Dissociative Identity Disorder and ISST-D: FAQ Dissociation and Dissociative Disorders. Also try An infinite mind: What is a Dissociative Disorder for a easier read.
For a take on why DID doesn’t exist, try Multiple personality disorder – it’s so ripe for ripping apart critique, again something to save for another day.
Leonard, D., Brann, S., & Tiller, J. (2005). Dissociative disorders: Pathways to diagnosis, clinican attitudes and their impact. Australian & New Zealand Journal of Psychiatry, 39(10), 940-946. Retrieved December 30, 2008 from EBSCOhost.