Posts Tagged 'Research'

The big stampeding elephant in the room – otherwise known as self injury

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

—————-
Now playing: Sia – Breathe Me
via FoxyTunes

Advertisements

Safety of intellectualisation

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.

—————-
Now playing: Lost and running by Powderfinger
via FoxyTunes
watch via YouTube

Gender, victimisation, healing and society

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.

DID & Memory

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

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.

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.


October 2017
M T W T F S S
« Sep    
 1
2345678
9101112131415
16171819202122
23242526272829
3031  

Categories

I’m feeling…

My Unkymood Punkymood (Unkymoods)

Twitter Updates

del.icio.us