Archive for December, 2008

What is DID?

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 -

  1. How do you define a “personality”?
  2. What is meant by “taking control”?
  3. 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 (Being Pamela).

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.

Reference:

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.

Trying to explain DID and time loss to a friend…

Last night was interesting…  We again struggled to sleep and ended up talking to Kriss (our friend in England) until about 3am.  We started off talking using Yahoo messenger, which allows us to be more open as there is an increased level of safety that comes from talking without hearing their voice change into the “good grief this chick is crazy” tone – Kriss has never done this with us, but there’s always that fear.

It was his birthday just after Christmas, and unfortunately it was on one of the days that we “lost” to the dissociation.  There was  a brief spot of lucidity when we tried to phone, but it was pretty short lived.  We tried to explain how we lose time – from just minutes through to weeks, and didn’t explain it all that well so ended up using going to Madagascar 2 to try and describe what happens…

Sophie, Buffie or Management will buy the tickets and get it all organised – making sure we’re on time, talking civilly to the mother etc.  But when the movie starts the usual “me” that Kriss talks to steps back and a 5 year old comes forward to watch the penguins, an 8 year old comes forward to watch the monkeys, the 5 year old comes back to watch the dancing and a 3 year old comes forward to watch the baby animals.

Sophie, Buffie or Management have little knowledge of the movie and just lose that time to those other parts.  Sophie has some awareness of it to ensure safety, but that’s it.  She was told that this one wasn’t as good as the first one, and even the “Move it” song wasn’t as much fun.

We think he’s starting to understand it a little more, which is a bit scary.  He also picked up when he started talking to Management rather than Buffie – that is unusual in that it’s such a smooth transition that most people don’t pick it up unless Management is suffering badly from hayfever…

So this is how the rest of us explain the dissociation and time loss, the librarian is going to write something about it later to look at it from a more peer reviewed, research point of view…

One way to explain the noise of DID…

We struggle to help others understand what it’s like living with the internal noise of DID.  We’re not really sure we understand it fully and we don’t know how it compares to those who live with the level of internal conversations amongst the different “I” functions that usually exist in everyone.

We talked to our friend from America briefly and he explained it to his wife in a way that we thought was excellent in it’s simplicity.  They are staying at her relatives house and on Christmas Day they had many people from different generations present – from babies through to those in their 80’s.  It was mid afternoon so there was a usual mayhem that occurs in a full house when its snowing outside – children running around; some children crying from a fall or wound; teens being loud or silent; adults both “alcohol enhanced” and sober carrying on different conversations; and the elders sitting quietly watching the whole performance and trying to add the occasional piece of advice.

In amongst all of this usual level of quite loud noise, he asked his wife to come into the bedroom, lie on the bed, close her eyes and just listen.  She said at first that she didn’t hear anything, but when asked again said “Ohh you mean the kids and everything”… His response – Yes, this is the noise that is in my head nearly all the time.  It’s in my head and I can’t just walk away from it.

We thought this was a great way to show others what it can be like.  With us we have a constant level of background noise which usually isn’t an issue.  It’s just when it gets to the level of constant internal screaming that the problems begin.

Yes, we’re struggling today… hence the two posts on the same day.  Anything to maintain some train of thought, keep focused and minimise the dissociation…  The level of noise is high and the feeling of running in circles banging into things as we run is getting worse.

Confidence at an all time low

We’ve met some really amazing and inspiring people through the online community who have helped us in ways they will never realise – whether it be from just a kind word, an entry or clip that validates our experiences or by talking to them online or on the phone.  But we always struggle with how to communicate…

We don’t know how to form and maintain friendships.  We’ve never had any lasting friendships and would probably be described as fickle in our friendships.  We know that the true motivation for this is a combination of not feeling worthy of having friends and protecting ourselves from any hurt that comes from caring about someone enough to let them inside our rather impressive walls.

Basic things like making comments on someones blog entry can take a great deal of thought and time in order to try and minimise the potential for stuffing it up.  This often happens to the point where we tie ourselves in knots with our thinking and editing and just post it out of frustration or stupidity.  So a partially edited comments goes out there and we feel AWFUL.  We avoid the blog and panic.  It’s worse when we care about the opinion of the person or the subject matter of the entry.

We know this is all due to a total lack of confidence…  Something that people around us in the 3D world don’t really seem to get.  We’re considered high achievers.  We stand in front of up to 40 people and teach Information Literacy.  On Monday at work we were all sitting around having afternoon tea and one of the ladies was talking about blueberries and whether to make them into muffins or leave them as is.  Our team leader said she preferred them raw… out of nowhere, one of us said “Ohhhh wrap them in muffin, they’re better that way”.  It was one of the less embarrassing things one of us has said uncensored, but it gives an indication of how much we have to try and think about what we say and how we say it.

We just don’t have the confidence to bounce back from set-backs… we’re a bit fragile at the moment and HATE being it.

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Christmas is over…

So another Christmas is over… it’s now 1am on the 26th of December.

We did some really positive things on Christmas Day -

  • We cooked a meal that involved touching raw meat – we’re not vegetarians, but have issues about touching raw meat.  We think it’s because the father was a butcher and some abuse occurred at his work.
  • We talked to the oldest brother on the phone, we dissociated to a younger part, but we managed to stay on the phone.
  • We told the mother that we weren’t comfortable with her giving out our confidential phone number to the Aunt who was stupid enough to address our Christmas card to our married name – we never used the ex-husbands last name.  This is also the Aunt who still talks to the father – she has more than a few issues!
  • We talked to our friend in England and got teased unmercifully about our accent.

This friend doesn’t know the first thing about dissociation, but he has this amazing ability to know when it’s going to happen.  If we’re talking through IM he just suddenly stops messaging… often he can spot the change in our language and tone before we do.  On the phone he spots it and depending on what happens will either tell me to hang up and go for a walk or get a cup of tea or just keep talking through it to see if the talking will bring us back.

He doesn’t care about it.  He just carries on being the rather laid back, level headed guy that he is.  His only comment is that he is sorry for what happened to us.  We sent him the INSiDE clip to try and explain what happens in this head.  He’s now going to research it – he’s a teacher who did psychology as his undergraduate degree.  He’s the first person who isn’t a survivor that we’ve told anything about the dissociation to.  It was sort of thrown at him as he triggered us badly the first time we ever talked to him – he asked how we got on with the father…  Unfortunately the ones who were looking for a fight came forward and tried to bait him.

So another Christmas is over…

Just the New Year to go…

*Sigh* my blog is about to be highjacked

This blog was intended to be my space to look at serious issues… but now the others have realised that they like this interface better than the blogspot account we have.

Instead of trying to create further barriers within our system, we’re going to be melding the two together… *sigh*… there goes the neighbourhood… lol.

I’m assured that I can keep doing “serious stuff”, but they want to balance that and put it into context of what is happening in our life.

Despite my rather cynical outlook, I’m glad that we’re going to be working together.

Wishing everyone a happy holiday season…

Wishing you a good holiday season…
For many this is a difficult time, but we hope that some good memories are created…
Please take special care of yourself during this time…

Sophie, M, One and the others who contribute to this blog and life.

Parental abuse – the cruel conflict

Recently a series of articles ran in a New Zealand newspaper called Our lost children.  Usually I don’t pay much heed to newspaper articles – if you’ve seen the news wire snippets before further political and sensationalistic spin is added, you’ll know why.  But Parents’ abuse the cruellest conflict by Ericksen (2008), hit close to home.

Of the thousands of children Barnardos works with who have been abused or seen abuse, about half defend the person responsible for the abuse.

“It’s because they love them – that’s their parent,” said northern region spokeswoman Jenny Corry.

“They are the most difficult to shift in terms of their thinking.”

The other half will withdraw from conversations, afraid that if they speak out they will break up their family and be blamed for it.

As an adult you can see the double bind that these children are facing.  The parent they love is hurting them, but they’re still a “parent” with the loyalty and attachments this concept evokes for the child.  The betrayal that the abuse brings is immense, and has shown to have a lasting impact – in another article within the series, it was stated that the ages 0-3 are critical for the rapidly developing brain.  This is supported and expanded by Watts-English, Fortson, Gibler, Hooper & Bellis (2006), who state that the stress caused by childhood maltreatment can cause a negative effect on the brain and ongoing global functioning.

In very simplistic language – child abuse can hinder the development of the brain.

As a survivor of child abuse I have issues with this – it is implied that not only did those who should have protected me didn’t, but their actions may have impacted on the basic physiology and biology of my brain.  In some ways this is obvious through the disorders that I now exhibit, for example individuals with Post Traumatic Stress Disorder (PTSD) have been shown to have a smaller hippocampi than those in control groups (McNally, 2003).  My global functioning has been assessed to be negatively affected by 50-60%.  So there can be little doubt that the abuse has had long term effects on my daily functioning.

Can this damage could ever be reversed?  In the case of the coping mechanisms developed to cope with this abuse, good therapy can assist in returning functioning to a level that allows me to carry out the daily tasks enjoyed by my peers.  But will the potential damage done to my brain ever be reversed?  The answer to this question is beyond my control.  One thing that gives hope is that those who have a hemispherectomy can and do, have a full and productive life.

No matter what the damage has been caused, it is up to the survivor to work with what they have to make the most of the life given.  Making the most of that life can have different meanings to each individual – it could mean being able to get up to face the day; working on therapy as a full-time job; or being employed and working in a therapeutic environment to heal those wounds.

There is always hope.

References

Eriksen, A., (2008, December 12). Our lost children: Parents’ abuse the cruellest conflict. The New Zealand Herald. Retrieved December 22, 2008, from http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10547735

McNally, R., (2003). Progress and controversy in the study of posttraumatic stress disorder. Annual Review of Psychology, 54(1), 229-252. Retrieved December 22, 2008, from Academic Search Elite.

Watts-English, T., Fortson, B.L., Gibler, N., Hooper, S., & Bellis, M., (2006). Psychobiology of maltreatment in childhood. Journal of Social Issues, 62(4), 717-736. Retrieved December 22, 2008, from Academic Search Elite doi:10.1111/j.1540-4560.2006.00484.x

Introduction

As a librarian, we are used to researching and finding the answers to our questions.  As a person with a dissociative disorder, the need for reliable information is high, but the quality of the information available is mixed.  It is easy to search for one aspect of dissociation and get a range of resources that run the spectrum from ridiculous and insulting, through to peer reviewed, balanced debates or research.

We have another blog called Scattered Pieces about the struggles, challenges and joy that the dissociation can cause.   So this blog will not concentrate on that aspect of our life, but more the questions that result from those experiences.  This will solely be our opinion on the pieces found.  We’ve been librarians for 10 years now, so know about evaluating information.  But we also have the disorder, so have a bias as to what fits for us and how it influences our world view.  As with any information you find on the Internet, you should question its validity and the motivations for publishing it in a public forum.


 

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