Scattered pieces

Today, two articles were published by the Sunday Star Times which highlight a troubling aspect regarding the recent changes in ACC guidelines (or clinical pathway)… ACC advisor silent on links to sex abusers (29 August, 2010), and Conflicting interests?

Reading these articles has left me with questions…

• How much influence have the ideologies of Bert Potter (a convicted pedophile), indirectly had on ACC Sensitive Claims Unit policies?
• If ACC commissioned research directly from Felicity Goodyear-Smith, why?  What was the motivation, considering her stance and ideologies were well known at the time of the later studies.
• Why did ACC commission research from a GP, rather than psychologists, psychiatrists or clinical psychologists?
• Why did ACC commission research from a person who was a founding member of a group dedicated to defending those accused of sexual crimes (Casualities of Sexual Allegations – COSA), and who has been used as an expert witness defending the accused?
• Why did ACC commission research from someone who could later argue “that gonorrhoea in pre-pubescent children was not necessarily an indicator of sexual abuse”? (see Conflicting interests? and What is the evidence for non-sexual transmission of gonorrhoea in children after the neonatal period? A systematic review)
• My knowledge of the tertiary sector, would indicate that the research was directly commissioned.  However, if ACC commissioned the research from The University of Auckland, and they assigned the research to her… why was it assigned to her and why did ACC commission more research without any provisos that she not be involved in further research associated with sexual abuse?
• In the research where Ethic Committee approval was needed, what was disclosed about any conflicts of interest regarding the study?  Not only of the main researcher, but also other people involved in the study.

But, the most important question…

What is ACC going to do with this information?

One step was the appointment of the review panel, who are looking at the changes in policy and their impact on claimants… but this was instigated by a Dr Nick Smith under pressure from the opposing political party and public pressure in the form of survivor rallies and news stories about the suicide of women refused ACC funded counselling (see Denied help for sexual abuse, dead days later).

It also seems hard to believe that ACC didn’t know the type of research, or outcomes that would be produced, when the book First do no harm: The sex abuse industry, was published in 1993.  So the ideologies were well known before the 2003 and 2005 ACC research was commissioned.  So, may be the more appropriate question is…

What is ACC going to do, now that this information is public?

On a personal note… One of the arguments put forth by Felicity Goodyear-Smith, is that children seek out sexual contact with adults as part of a consensual act.  I find this the greatest insult.  I initiated sexual contact with adults, I know this and carry the shame and confusion as a result.  But, well before I did this, I had been forced into sexual situations which were beyond my ability to cope or understand them.  I was abused.  I was used.  I was stripped of my humanity and treated as a plaything.  I was so sexualised by the time that I initiated the contact, that I didn’t know what the appropriate sexual boundaries were.  I thought that it was “normal” to play those games.  I also found that it was over more quickly if you acted a certain way.  It hurt less.  It was also one way to get a sense of power, in an otherwise powerless situation.  So one statement, treated as generalised fact, can hide a huge range of issues and problems.  There are no simple answers when it comes to child sexual abuse… well, there’s one simple answer – it’s wrong… morally, ethically and legally wrong.

I’d like to thank Tim Hume, Barrie Leslie and Kyle MacDonald for speaking out.  I know there are others, not named in the articles who contributed, so would like to thank them as well…

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Now playing: The Feelers – Stand Up
via FoxyTunes

In New Zealand, in order to receive ACC assistance, you need to have a diagnosed mental illness directly related to the abusive injury. I know from reading other blogs, that health insurers around the world, often require a recognised diagnosis in order to provide (or exclude) coverage. Depending on where you’re from, that diagnosis is determined by either the DSM (Diagnostic and Statistical Manual) or the ICD (International Statistical Classification of Diseases and Related Health Problems). In New Zealand, we use the DSM, and this is currently being substantially revised – some say rewritten, and is due for release in 2013.  If you’re wondering why I’m worried about something that is so far away, well, this manual determines whether I will receive ongoing assistance, what that assistance will look like, I enjoy being an informed consumer, and I’m curious how mental health professionals perceive my various reactions to life.

At the moment, proposed revisions are being made to the DSM-5.  There had been all sorts of rumours circulating that there would be a whole plethora of new diagnoses, and the removal of others – including DID.  Based on my rather uneducated eye, the changes are “interesting” rather than sweeping.  Running through the disorders that I’ve been labelled with over the years, there’s an interesting mix of tightening of the definitions, and what seems a desire to create a “catch-all” diagnosis.  Here’s my take on a couple of them…

300.14 Dissociative Identity Disorder
My first concern is that they are now going to allow the disruption of identity states to be reported by the patient.  Call me cynical and a worry wort, but if you’ve read tales of caution about the “attractiveness” of having DID (for example Tempy’s entry Lemme just say it), then this may open the way for some misguided people who have problems, but not necessarily DID, to “seek” the diagnosis.

Then we get onto the “experience of possession”… I think they need to clarify this wording somewhat.  To me, it sounds like something associated with spiritual or religious possession.  That again, could just be my cynical take on it.  This could be saved by the wording of the last criteria, where the disturbance is not part of “accepted cultural or religious practice”.  But still, the word “possession” conjures a certain image that isn’t positive!

There now seems to be some acknowledgement that abusive events can be repressed – “Inability to recall important personal information, for everyday events or traumatic events, that is inconsistent with ordinary forgetfulness.” I know this won’t eliminate the False Memory Syndrome (FMS doesn’t appear in the DSM as far as I can tell) supporters, but it gives an official nod to the research supported indications that traumatic events can be suppressed, or forgotten as part of a coping mechanism (and the crowd goes wild – insert by Mickie).

According to the rationale behind the changes, this new wording is aimed at reducing the use of DDNOS, the understanding that forgetting everyday events is common (i.e. mild dissociation is common) and an indication that conversion and somatic conditions need to be looked at when making any diagnosis.  Personally, I think the wording could benefit from some further work.  I rather like having DDNOS as a “fall-back” diagnosis when I’m faced with a mental health professional who doesn’t believe in DID.  But overall, I can see some benefits to the changes – the big one for me is the inclusion of the inability to recall traumatic events.

309.81 Post Traumatic Stress Disorder
There seems to be further indication that dissociation is a normal response to trauma – something that the research has shown for years, with the wording “Dissociative reactions (e.g., flashbacks) in which the individual feels or acts as if the traumatic event(s) were recurring (Such reactions may occur on a continuum, with the most extreme expression being a complete loss of awareness of present surroundings.)”

Persistent distorted blame of self or others about the cause or consequences of the traumatic event(s)” – they’ve acknowledged that self-blame is an issue for survivors!

Irritable, angry, or aggressive behavior” – added aggressive behaviour, which is a great inclusion – I’m thinking in particular about my ex-husband with this one.

According to the rationale behind the changes, there appears to have been a great deal of input into this diagnosis, but little actually changed.  The changes that have been made appear positive in broadening the scope of the reactions that those with PTSD can have, as well as defining the time frame associated with the onset and continuation of symptoms.  I admit not to having as much of a vested interest in this diagnosis, as I think pretty much any survivor will fit this diagnosis.  It’s more about how far reaching it goes.  I appreciate that they’ve indicated the dissociative experiences that can occur – but it begs the question as to why DID is not on the PTSD spectrum?

301.83 Borderline Personality Disorder
I’ve heard of BPD being a diagnosis given when they don’t know what else to label you…  Overall, I think that those with the diagnosis have an incredibly bad reputation which is undeserved.  I’ve been labelled as having “Borderline traits”, but when reviewing the PTSD criteria, the behaviours that they describe as “borderline” could be PTSD.  In many ways, the revisions still allow BPD to be a “catch all” diagnosis for when they’re not sure what else to do with you.  It has aspects of PTSD, dissociation, psychosis, low self-esteem, impulsivity, etc.  When you look at the different aspects on the surface, it is easy to see how many survivors could meet the criteria; it’s only when you do the diagnostic tests that you realise that the severity needed to meet the diagnostic criteria.

To me, this diagnosis seems to have been fleshed out substantially.  This worries me when you consider the poor reputation and often poor treatment that those with BPD receive…  When I was initially given a diagnosis of DID, I was told there were no treatment plans for that diagnosis in New Zealand, so they sent me through the system with a diagnosis of BPD… I was shocked, dismayed and victimised by some of the mental health professionals who treated me as “another borderline”.  It’s taken many years for the public health system to remove BPD from my records.  I can see with this revision, that many more people may receive the diagnosis and associated poor treatment.  Mental health professionals really need to change their attitude to those with BPD.

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Overall, the revisions seem intent on minimising the use of the “NOS” diagnosis.  But in some areas it won’t be possible – from my understanding of the criteria, I will still meet the EDNOS diagnosis.  I’d encourage you to check out the proposed changes… it’s an interesting process they are undertaking.  There has been criticism that the work is being rushed, so that means we have more of an obligation to check it out – especially mental health professionals!

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Now playing: Sarah McLachlan – Angel
via FoxyTunes

I recently commented on an entry of Ivory’s, and included information from an article titled A failure of curiosity by Janet Migdow.  Unfortunately this article isn’t available freely, but I’ll describe the content here for those who are interested.  It’s an article that has stayed with me for many months, it offers an interesting insight into the therapeutic relationship between an intelligent woman diagnosed with DID and a therapist who is willing to examine their own processes and thoughts.

The first part of the article gives the therapists background – her drive to help people, her natural curiosity that was evident from childhood and her desire not to lose that curiosity.  She writes:

“I have always seen curiosity as the quintessential characteristic of a good clinician. I have never thought curiosity alone would make the consummate clinician. I simply think that, without a burning curiosity, becoming a therapist is a useless endeavor.”

(Migdow, 2008, p. 46).

Midgow describes the client as “Dr. B., a Caucasian, fifty-six-year-old, uppermiddle-class, professional woman of mild manners and distinguished bearing” (Migdow, 2008, p. 48), diagnosed with DID.  She had been a client for 6 years and over that time had stabilised to the point of becoming more aware of the parts and increasing her functioning.  Part way through their journey together, Dr. B. starting turning up late for sessions.  This lateness coincided with the topic of the sessions becoming more banal, with Dr. B. deflecting any attempts to probe deeper into the issues at hand.  Migdow describes this sort of deflecting as hypnotic - as a person who has done this sort of deflecting, I understand what she is talking about, it becomes hypnotic for the person doing the deflecting as well.

It was at this point, that Migdow recognised that she was bored.  She had gone from a place of deep respect for her client, to a place of boredom.  Migdow looked for issues within her own life to have brought her to this place, but identifies that the dissociative fragments encourage detachment from the issues.  This detachment allows Dr. B.’s skill with social chit-chat to maneuver the topic away from anything too deep (or scary).

After forcing Dr. B. to be aware of an incident where she is showing obvious signs of distress, it is revealed that it is the dissociative system is protecting both the client and the therapist from the events of the past.  The secrets were still being so carefully protected from everyone, with this chit-chat seen as the best method to continue all diversion from the truth.  Dr. B. had never realised that this was another of the systems defenses and had always associated it with there being “something wrong with my brain” (Migdow, 2008, p. 51).

Migdow (2008, p. 52) explains the sensation as:

“… you feel like a door cracks open in your mind, you experience yourself as noticing something familiar and then you forget not only what you noticed but the fact that you noticed anything at all. You feel frightened of what you glimpsed and frightened that your own mind seems elusive.”

The explanation for lulling both the therapist and client is found… she isn’t bored, or boring… she has an incredibly protective system that thought the secrets and safety of the host must be maintained in any way possible.  This became a turning point in the therapeutic relationship… one where the right road was found, but the telling was hard (butchered Dante quote).

This article has at times given me hope – it helps me to understand that some of the waffle that I do is possibly aimed at self-protection.  I often find myself losing getting lost in the twists and turns of a conversation within therapy, but I’ve always associated this with me being stupid and not being able to keep up.  The article also helps me when I’m in the denial, this could be another diversionary technique to stop me from delving too deep into the past.  I know that my self-injury could be seen as either a diversion or a scream for help…

So much of what we do is aimed at trying to uncover our truth, but that is a hard road that has been protected for many years.  This article shows how one therapist realised that the road was constantly being passed by and only with strength and knowledge can we go down it.

As a note, while this article particularly dealt with the relationship with a person with DID, I think that it could be translated to almost any therapeutic relationship.

Reference

Migdow, J. (2008). Failure of curiosity. Psychoanalytic Social Work, 15(1), 43-52. doi:10.1080/15228870802111781.

Yesterday Liz gave me a handout about shame.  Intellectually I realise that I probably have feelings of shame, but I don’t identify with the feelings or concept of shame as it pertains to me.  To be honest, even after reading the handout, I still didn’t really get the concept.  So, I went in search of the answers in the literature…

Tomkins (as cited in Rahm, Renck & Ringsberg, 2006) states that “guilt concerns what one has done, whereas shame concerns who one is.“  Tomkins also considers that shame exists on a continuum from mild embarrassment through to humiliation, with chronic feelings of shame occurring when someone experiences humiliation for extended periods of time.  If the person carries the shame overtly, they will experience physical symptoms such as sweating, blushing, palpitations and hiding behaviours.  If the shame if covertly carried, the person will still feel the shame, but won’t be able to recognise or name it.  Shame will be described by those covertly holding it as feelings of being ‘stupid’, ‘feeling bad’ or ‘insecure’ (Rahm, Renck & Ringsberg, 2006).

As part of their study, Rahm, Renck & Ringsberg (2006) looked for word cues which lead to Indicator groups and their aspects of shame, as seen below:

.
This makes more sense to me than the quite abstract concept of shame.  It becomes a tick-able list where you can identify aspects of your behaviour and feelings.  It also helps to then draw the links to other experiences, behaviours and feelings – for example if you repeatedly felt betrayed by an authority figure, then this will impact on your ability to trust people and form attachments to those around you.

According to Feinauer, Hilton & Callahan (2003), “shame promotes a desire to hide and disappear and may intensify to the point of wishing to no longer exist”.  Suddenly lots of little things about the concept of shame started to click into place… W has a rule that we must be invisible, she is also the first step on our road to suicidal intent.  So it seems as if I carry shame not as an emotion, but as a symptom and indicator of the abuse and experiences from my past.  It is chronic and covert in my life.  What is confusing is that much of my serious self-injury is based around ensuring that I experience more shame.  This makes no sense.  I understand that we will look for what is comfortable and familiar; sometimes that comfort and familiarity comes from self-injurious behaviour.  But why would I seek further humiliation?  Another topic to research while I’m off work relaxing…

This really only touches on aspects of shame, but it’s all I can cope with at the moment.  If I’m up to it later in the week I’ll expand on it so that I can process it in time for my session next week with Liz…

Wish me luck, I pick up the mother for another three week visit tomorrow…

References

Feinauer, L., Hilton, H., & Callahan, E. (2003). Hardiness as a moderator of shame associated with childhood sexual abuse. American Journal of Family Therapy, 31(2), 65-78. doi:10.1080/01926180390167115

Rahm, G., Renck, B., & Ringsberg, K. (2006). ‘Disgust, disgust beyond description’ – shame cues to detect shame in disguise, in interviews with women who were sexually abused during childhood. Journal of Psychiatric & Mental Health Nursing, 13(1), 100-109. Retrieved October 5, 2009, from CINAHL with Fulltext.

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Now playing: Missy Higgins – Warm Whispers
via FoxyTunes

In our post on Saturday, we mentioned that we were self-injuring daily.  To us this was no big deal, and we listed it as number 4 in the reasons why last week was bad.  Yet, this is what almost everyone picked up on within the comments.  This surprised us – we couldn’t see what the issue was.  Self-injury in some form, has been part of our life for as long as I can remember.  In some ways it has become a normal part of life.

A definition of self-injury or self-harm is interesting to arrive at.  I’m going to break one of M’s rules and use Wikipedia for the definition – not because it’s particularly good, but rather like all things Wikipedia, it’s a good starting point.  So according to Wikipedia:

Self-injury (SI), also referred to as self-harm (SH), self-inflicted violence (SIV) or self-injurious behaviour (SIB), refers to a spectrum of behaviours where demonstrable injury is self-inflicted. The term self-mutilation is also sometimes used, although this phrase evokes connotations that some find worrisome, inaccurate, or offensive.

(Wikipedia: Self-injury, 2009)

So how do you determine what a demonstrable injury is?  Some of my self-injury is psychological in basis, which is notoriously difficult to identify as having a demonstrable injury.  Does the injury have to be immediate?  I consider eating disorders to be a form of self-injury, but the effects are not always noticeable immediately.  So in short, self-injury is like defining the length of a piece of string.  To me, what defines self-injury is the intent of the action or non-action.  Why did you pick that sore?  Why didn’t you eat that piece of cake?  It’s definitely not about how much you bleed or how big the bruise is, it’s about why it happened and how it made you feel afterwards.

In many ways I feel like a fraud talking about self-injury.  I mean I’m “high-functioning” and “we” don’t self-injure.  Then I look at the scars on my skin, the signs of malnutrition evident in my toenails, the sores that never heal because they’re picked at, the bruises on my leg etc.  None of these are an attempt to get attention – the scars etc are on parts of the body where they won’t be easily found or recognised as self-injury.  They’re also not an attempt at suicide – the plans around suicide are very separate from our self-injury.  But the over-riding feeling for considering myself a fraud when talking about self-injury is the shame.  It is considered by society as a weakness, a character flaw, disgusting, self-centred…  My opinion of self-injury is affected by this societal view.  If someone I don’t know says that they attempted suicide or self-injured, I tend to dismiss them as attention seeking – I buy into the societal whitewash.  But I also know many people who self-injure on a personal level and at no time do I consider them to be attention seeking.  The big difference between these scenarios is that those who really suffer with self-injury rarely talk about it and I know the pain of my friends.  I know they’re not faking.  I know that they sometimes struggle to get out of bed and even pretend to keep going.  Their pain is real to me.  But I also feel that sense of helplessness that comes from not being able to “fix it” for them.

I think this is a huge reason why society view self-injury as it does – there is a sense of helplessness about what to do.  Will sympathy make the person feel worse?  If we talk about it will it give them ideas?  But it’s mainly I DON’T UNDERSTAND…  Often the lack of understanding comes from all sides – the self-injurer often doesn’t know why they need to injure, family and friends don’t understand where they went wrong, and the doctors treat you as another “one of those patients” where you don’t want to get too close because it’s a long journey out of self-injury.  Yes, it often becomes about the people around the self-injurer rather than the injurer themselves.  It is rare to find a person who will sit with you during that pain in an unconditional way.  But when you do, it’s incredible.  I’m not sure I would have the strength to do it, I’ve talked to one person who needed that unconditional support and I’m not sure how effective I was.

Sorry, this is very rambling.  But my thoughts about self-injury are so confused.  I know I do it.  I know I shouldn’t, but every day it happens.  I’m worried what will happen if I accept this as my reality – will it mean that I’ll also be accepting the self-injury and not want to stop?  Or, will it mean that I can look at the stampeding elephant coming towards me and make it change it course?  In the words of Frank – fucked if I know.

I hope that the more we talk about it, the less of a grip it will have over me and others who suffer.  Not looking at the elephant in the room doesn’t make it disappear, it just makes the shame more intense.

References
Wikipedia: Self-injury. (2009, July 9).  Retrieved 13 July, 2009 from http://en.wikipedia.org/wiki/Self-injury

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Now playing: Sia – Breathe Me
via FoxyTunes

Please note: This entry may trigger due to talk of sexual abuse.  When reading this, also consider that our point in the healing journey is still firmly in the intellectual, and it is one of our more unemotional ones writing this.

Reflecting upon my abuse, I can see how such an ‘‘unpopular topic’’ as child sex abuse can be influenced by the discourse of scholars and ‘‘experts’’ who attempt to categorize sexual abuse in terms of severity, based on levels of intrusion, duration, trauma, and the relationship between the victim and the offender (Kemp, 1984). From this ‘‘abuse degree perspective,’’ one can rationalize that my abuse wasn’t all that bad. After all, look at how horrible other people had it compared to you. In fact, you should be thankful, for the trauma could have been a great deal worse. In the words of Rambo-Ronai (1995), I begrudge this clinical analysis and, as many of my friends and acquaintances would attest, ‘‘resent the idea that my situation was in any way fortunate.’’ Indeed, the problem with this quantification of abuse is that it sounds strangely like my mother’s denial of these events. I wonder if any abuse-crisis counselor would rationalize physical abuse by stating ‘‘It’s really not all that bad, you can’t see the bruise, and you can still walk, and you didn’t get a broken neck. I wouldn’t worry about it. It will be gone in a week.’’

(Harvey Lemelin, 2006, pp. 342-343)

This quote  speaks volumes to me.  I’m so caught up in trying to learn the mental health system and how it operates that it’s easy to get lost in the labels, diagnoses, degrees of severity etc.  I know I do this to try and gain a sense of control over something that has a huge influence on my life.  Because of this desire for control (and therefore a layer of safety), I learn the language they use and what questions they ask in the assessments.  But what does this do apart from perpetuate the intellectualisation of my experiences?

I do find that some of the language has helped to describe my experiences and demystified many things that feel incredibly crazy.  But I also buy into that intellectualisation because of the barrier it provides to the horror it describes.  As an example, we regularly experience derealisation.  That sentence is easy for many mental health professionals to understand.  But it only touches the surface of that experience.  It is much harder to describe the feeling where your perception of the world shifts so that you are now looking at three movie screens; where the world suddenly appears brighter or more blurred; that feeling as if nothing is real or here and you are not part of anything.  We’ve spent over 5 minutes explaining our derealisation experiences to assessing psychiatrists, it’s much easier to just say that one line.  It makes it feel plausible, acceptable and real.

I constantly struggle with understanding our abuse.  We constantly play mind games with ourselves in an attempt to deny, minimise or prove that it didn’t occur.  Then we’re caught in a flashback or a memory “leaks” into our common awareness and we’re thrown into chaos.  We learned very early that emotions didn’t do you any favours – they were met with hostility, scorn or ignored.  Because of this, we’ve relied on the intellectual.  This is not to say that we’re incredibly intelligent, but rather there are very few of us who feel emotions.  We realise that we need to move beyond that façade of intellectualisation in order to be able to heal, but that also means moving into the abyss of emotions.

I’m not sure when we’ll be ready to take this step.  It will mean altering the way we look at the world and how we cope within it.  It will mean breaking down or modifying all of our coping mechanisms.  What is become obvious over the last few months is that we’re slowly starting to move back to the place we were about 6 years ago – incredibly high-functioning, high achieving and in the depths of denial.  We’re torn between wanting to find a therapist who can help us heal, and continuing down the road of denial and suppression.  While the mother was here she mentioned that we’re very withdrawn from everything, it’s a very easy and comfortable place to be in.  Realistically, I’m not sure we can stay there for long.

Reference:

Harvey Lemelin, R. (2006). Running to stand still: The story of a victim, a survivor, a wounded healer, a narrative of male sexual abuse from the inside. Journal of Loss and Trauma, 11(4), 337-350. Retrieved June 9, 2009, doi:10.1080/15325020600663128

Unfortunately, the article is only available through subscription or purchase.

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Now playing: Lost and running by Powderfinger
via FoxyTunes

Please note: This entry may trigger due to talk of sexual abuse.  When reading this, also consider that our point in the healing journey is still firmly in the intellectual, and it is one of our more unemotional ones writing this.

About a year ago, Matthew (our American friend) asked us if we considered that it was different for males to be sexually abused.  My immediate reaction was to say “of course”.  I said this purely from what male survivors have told me about the reactions of those they have made disclosures to.  The ex-husband was told that he should count himself lucky that he learned about it early, or that he was lucky he “got some” regularly.  To put this into context, he was sexually abused by his sister and her friend from the ages of 7-13.  Matthew has been accused of being homosexual because his abusers included males – his abuse started at the age of 3.

I know that women are also subjected to this sort of minimisation, denial and warped thinking.  But because of the perception of gender roles, many societies do not look at male sexual abuse victims in the same way as female victims.  This inequity can be seen in the stoning of a female rape victim in Somalia and the need for articles about the problems male rape survivors experience in America (e.g. Male disclosure of sexual abuse and rape).  This also makes sense within my culture – I crave secrecy about my abuse because I am an educated middle class woman of European descent, and “they” aren’t victims.  In New Zealand men are expected to play sport, hunt and do all things masculine, they are not expected to be victims.  Victims are that group of people whom no one ever sees, hears or knows.  The perpetrators are unknown “creepy” men in long overcoats whom drive slowly past schools.  Yes, stereotypes are alive and well around the world.

Maybe Rambo-Ronai (1995) and Blair (2002) were right when they compared society … to an abusive patriarch who demands the silence of his children. The groundbreaking work of the feminist movement did much to decode the complexities of violence and abuse, and new service delivery models for trauma have emerged (Goodwin, 2005); however, despite their titles, many agencies that identify themselves as sexual assault centers only serve women. This preclusion of male victimization is no doubt due to the primary mission to address the impact of male perpetration. However, through its inadvertent sole-gender mandate, these centers deny the reality of sexual victimization of men. Thus, male victims are provided with no avenue of reporting or addressing sexual abuse. What occurs is that social stereotypes are indirectly reinforced, and male survivors of sexual abuse remain social enigmas (Goodwin, 2005; Pelka, 1997).

(Lemelin, 2006, pp. 345-346)

We live in New Zealand where as a female survivor of abuse, we can access woman’s support programmes and specialised domestic violence courses for female survivors.  If I was a male survivor, my options for accessing those free programmes would be limited.  Many of the programmes receive funding on the proviso that the programme be targeted to a particular population (predominantly females, youth or a cultural minority).  I can see how this may assist the participants, but I can also see how this may create a barrier as well.  I’m not advocating for the gender specific programmes be disbanded, but rather there be a balance.

It has been interesting writing this entry.  There has been much angst about it internally due to the fear of offending any readers.  I apologise if I have caused offense by what I have written – especially to the male readers of this blog whom I know B and Sophie care about.  I also realise that this may offend woman readers, but I hope you can see that I’m not trying to minimise the woman’s experiences, but rather draw attention to a perceived inequity regarding an access to services and an attitude towards male survivors.

Reference:

Lemelin, R. (2006). Running to stand still: The story of a victim, a survivor, a wounded healer, a narrative of male sexual abuse from the inside. Journal of Loss and Trauma, 11(4), 337-350. Retrieved June 9, 2009, doi:10.1080/15325020600663128

Unfortunately, the article is only available through subscription or purchase.

Memory functionality in those with Dissociative Identity Disorder (DID) is probably one of the most controversial part of the diagnosis.   According to the DSM-IV-TR, in order to meet the diagnostic criteria for DID, a person must experience:

Inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness.

(American Psychological Association, 2000).

The wording for this criteria mean that it is up to the diagnosing professional what is to be considered “extensive”.

In our experience this has meant that a majority of our childhood cannot be remembered.  There are occasional snippets, but much of our childhood and teen years, up until the age of 16 are predominantly made up of family stories and certificates.  We get glimpses or snatches of our past, but much of it is a blur of pictures, smells or just is “lost”.  It’s a very odd feeling to have little knowledge of your own history.  What memories we do have of these years are lumped in the ages 7-9, this is not so much because these were the ages where we have clarity in our memory; but rather because the two alters who were most present in our younger years are this age.  Because they have little concept of time, everything happened to them and they are 7 and 8, so it must have happened to the body when it was 7 and 8.

This has confused many people assessing our mental health as we are able to mention lots of things that happened in those years.  What they often neglect to ask is about the school we were attending at the time, or whether we wore a school uniform to place the experience into a context.  So our 8 year old will say that “experience X” happened when we were 8.  But she also knows that we wore a school uniform at the time, meaning that it must have occurred after the body turned 13 as this was when we had to wear uniforms for school.

This concept raises the specter of False Memory Syndrome (FMS) and inaccuracies with recovered memories.  If we can’t remember most of our past, how can we be sure that any abuse we talk about happened?

In What is DID? I mentioned the opinion that DID is on the Post Traumatic Stress Disorder (PTSD) continuum.  Note that the major aspects of PTSD are re-experiencing the event and avoidance of the stimuli; with amnesia considered one possible way to avoid the stimuli.  According to Leskin, Kaloupek, and Keane (as cited in Gleaves & Williams, 2005), there is a struggle between re-experiencing and avoidance.  But it does show that it is possible to experience amnesia for traumatic events – for example in documented events such as the Holocaust (van der Hart & Brom, 1999).

An important distinction in this amnesia is that while the autobiographical memory might be affected by the trauma; the feelings, habits and sensory memories will remain (Gleaves & Williams, 2005).  Again, to bring this to our experience, one of our triggers is the smell of rubber.  We would avoid the smell of rubber without any realisation as to why.  We knew something bad had happened in a school playground, and it was only when more of the autobiographical memory was accessed that we realised that we linked the smell of the rubber to the tractor tyres that we were on.  So from this event our sensory memory remained intact, but the autobiographical memory was partially lost.

So if DID is further along the PTSD spectrum, surely this would mean that the memory issues surrounding events would be more advanced.  Whether this advancement would also impact on the sensory memory is not clear – again in our case, we have some sensory triggers which we cannot tie to any event.  So it would seem as if there are more gaps in autobiographical memories as the trauma covers more events over a long period of time.

So is this recovered memory accurate?  Studies cited in Gleaves & Williams (2005), state that the central themes of recovered memories are no more or less accurate than continuous memories of abuse.  In the instance that is described above, one of the perpetrators was jailed two years ago for historical sexual abuse to other girls – so women independent of us reported this man as being an child abuser while he was in his early to mid teens.  We could have all imagined it, but the chances of this same man being nominated as a random target by women with no contact with each other would be fairly long odds.

The other controversy associated with FMS is that DID is an iatrogenic occurance cause by over zealous therapists.  In some respects this controversy has had the benefit of causing a growing number of studies which look at the DID diagnosis from a variety of viewpoints.  Gleaves & Williams (2005), accept that poor therapy techniques can cause someone with DID to deteriorate, but this is not iatrogenesis.  It indicates that there needs to be training for the therapists in the areas of healing from trauma.

I’ll expand on some of these ideas later in another posting on DID and time loss and co-consciousness.

References

American Psychological Association. (2000). Diagnostic and statistical manual of mental disorders: DSM-IV-TR (4th ed.). Washington: Author.

Gleaves, D., & Williams, T. (2005). Critical questions: Trauma, memory, and dissociation. Psychiatric Annals, 35(8), 648-654. Retrieved January 11, 2009, from Health Source: Nursing/Academic Edition database.

van der Hart, O., & Brom, D. (1999). When the victim forgets: Trauma-induced amnesia and its assessment in Holocaust Survivors. In A. Shalev, R. Yehuda, & A. McFarlane (Eds.), International handbook of human response to trauma (pp. 233-248). New York: Plenum Press. Retrieved January 13, 2009 from http://www.onnovdhart.nl/articles/Whenthevictimforgets280405.pdf

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.

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.

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.