Scattered pieces

To put this post into context, we’re VERY detached and withdrawn from everything at the moment.

Next week we have a mediation meeting with ACC regarding our Independent Allowance.  As we have no support person, we’re going to have to go to the meeting alone.  Our advocate lives in another town and can’t get here for the meeting due to flights not being available – he’s going to attend via phone.  I’m pretty sure that the stress of this meeting is one of the reasons we’re so detached at the moment.  We find it amusing that ACC recommend that you take a support person to these meetings, but when you tell them that you trust people so little that you don’t have a support network they don’t seem to understand…

This is possibly the biggest problem we have, we just don’t understand what it is like to live in any other way that what we currently experience.  We have no idea what it is like to openly smile at someone and trust that they won’t hurt you.  It is also difficult for people who haven’t been hurt, to understand what it is like to live with this instinctive distrust.  This is obvious in the meanings we attach to words – which seem so different to what those around us consider those words to mean.  An easy example is the term “support network” – the potential therapist asked us who was in our support network was, we said “no-one”.  She then asked us if we interacted with people at work – of course we do, if we didn’t it would be impossible to stay invisible.  She considered this to be a support network.  But our cynical friend isn’t our support network, we’re hers.  We can’t tell her our problems – she’s got enough things on her plate without us telling her about our problems.  Also, talking about what we’re going through really isn’t appropriate in a work situation.

So we’re damaged and isolated.  This can be a dangerous mix.  Today we went to take some rubbish to the refuse station.  On the way there we were targeted by some boy racers who threw insults, finger gestures etc at us.  Sometimes this sort of confrontation will trigger a switch to a compliant scared one who cowers and tries to escape; sometimes it will trigger a switch to one who is extremely confident and the change in body language often will stop the potential confrontation.  Today it was different; today the trigger switch went from the compliant Sophie, to one who wanted to urge them on.  They wanted to be beaten up, they wanted to tell those boys that whatever they did to this body it was nothing, the only way they could do anything worse was to kill us, and she welcomed it.  After they drove off, the switch to M occurred.  M was not impressed.

We know we’re in trouble again.  We’re now just waiting out until after the ACC mediation meeting.

When will life be more than lurching from one anniversary or bad thing to another?  The potential therapist asked us if we wanted to move on from just surviving – we told her we wanted to move beyond just existing.  Yes, we know that’s being very melodramatic.

This is how we’ve been feeling lately – sorry to those who we’ve been slack communicating with…  We’re trying to work our way out of it…

Have we disappeared into the wall yet?

Disclaimer – this is a rant aimed at no one – well maybe it takes a few pot shots at the DID stereotype.  Please don’t take any part of this personally.

Kathy Broady wrote posts in her blog Discussing Dissociation about the 10 Benefits of Being Multiple and What if you don’t like being Multiple.  It’s been interesting reading these posts and the associated comments for many reasons.  As with any group of survivors talking about an important issue, there is a certain amount of transference and triggering by what is being mentioned.  This wasn’t helped by the (necessary) need for Kathy to moderate the comments, which could mean that people were responding to the latest comment visible; but when Kathy got through moderating them, suddenly your response was out of context with what was occurring.

What became apparent, is that there is a great deal of confusion about what happens if you don’t “like” being DID.  We can only speak of our experiences and feelings, but we DON’T like being DID.  This is for many reasons, some of which are -

1. It’s a disorder born from an abusive past – no one wants to own an abusive past.
2. The symptoms we experience as a result of being DID negatively influence almost every aspect of our daily living – and we’re considered high functioning.
3. We’re not just DID – it’s a cliché, but we are more than a label assigned by a psychiatrist.

It could be seen that our dislike of being DID would translate to us not liking each of the ones that make up our dissociative system.  In our case, this just isn’t true.  I freely admit that there are ones which terrify me or whom I just don’t understand.  But this doesn’t mean that I don’t like, or more importantly, respect them.  Some hold feelings and experiences that I can’t comprehend.  Does my fear filter through to these ones in some way – quite possibly.  But if that’s the case, then they can also feel the respect and care that I have for them.

Our dissociation was created in an environment that encouraged our isolation.  We didn’t reach or call out for help because we soon learnt that help wasn’t available.  So now when we look for hope and enjoyment in our life, we try to look externally to challenge those old habits of looking inward.  This is not to say that we don’t have internal hope – Sophie and Katie are our most obvious sources of internal hope; but rather we also need to learn to look outside ourselves.  External hope for us doesn’t involve any sort of higher power, but is more likely to be found in nature – a sunset, our cat acting like a kitten rather than her 14 years, etc.

David commented -

This thread, and the thread prior to it, about benefits of being multiple, have given me a curious sense that having DID is rather like belonging to an exclusive club of some kind, and I’m perceived as not playing by the proper rules of etiquette.

I’m going to take this slightly out of context, in that I have also felt very similar things in some areas of the online DID community.  In the very first online discussion forum that we joined regarding dissociation, it seemed very much a competition as to who had the “worst past” or “worst symptoms”.  Some of the people in the forum had a horrific past, there is no doubt about that.  But it became a very negative environment that seemed to invest in dysfunction rather than supportive growth.  When I say this, I also realise that we wallow in self-pity on occasion and are the first to admit that we are FAR from perfect!

I’ve also encountered suspicion regarding our ability to function and our diagnosis from other people with DID.  It’s a very odd feeling to be questioned about events that have occurred etc.  This has always been regarding things we have revealed, but it is still disconcerting.  What makes it more interesting is that some of us have quite different versions of events.  So unless the person we’re communicating with is aware of our dissociation, it can be hard to tell that they’re talking to another alter so the answer given could be slightly different.  A simple example of this is that W still believes that the family was excommunicated from the Church because we screamed during services as a baby; but I know it was because the mother started using birth control.

So what is all this rambling leading up to?

Only from our experience, we’ve found it very hard to find a community or even a few people that we feel some sort of connection with.  A connection that is based on similar experiences, struggles or views.  Because of this need to feel some form of connection and therefore acceptance, we often fall into the old habits of looking for approval, but expecting to be rejected.  This dynamic means that we look for slights when they’re not there, it also means that we can pick them up when they are hidden within a seemingly innocent question.  Also because of our insecurities and dysfunction, we have to be very careful that we don’t start to change in order to try and fit in a little more.  We did this sort of chameleon behaviour all our life to try and blend in and not stand out too much.

People with DID have different ways of coping, viewing the world and healing.  This is one of the reasons why I hate the generalisations about DID.  We are all different, some will look to a higher power for help, some will find art an outlet, some will continue to find humour in the oddest places, some will find that getting up each morning is an achievement… All of these are valid reasons to celebrate and an indication of healing.  These are also about being human.  We respect each persons right to find a way to heal that suits them, we just ask for that respect be reciprocated to all other survivors.

This is a purely knee jerk reaction to the assessment we had this morning.  But after an hour of trying to explain the problems we experience and the issues we face, one of women who came to the assessment called it a privilege to have heard some of our story and struggles…

I don’t want to know that hearing our experiences is a privilege for anyone, I want them to identify where we can all work together to make this life more bearable!

Both of the women were incredibly gentle and nice, but that one line (which Carol used to say frequently) altered the whole experience.  It’s such a “therapist” phrase…

On the good news front, we heard back from the other therapist who was recommended to us.  She’s accepting new ACC clients!  Hopefully we can afford her – even if it’s fortnightly…

Since we posted the previous blog entry, we’ve been very disconnected from everything.  It doesn’t feel like a full dissociative state, but rather very robotic and empty.  It’s a very hard feeling to describe and one we get quite frequently.  It’s possibly a mild form of derealisation – we know what it feels like to be fully derealised, and this isn’t it.

We managed to severely annoy our cat today – we moved the place where we feed her :)  She knows where her food is located, but is currently sitting on the spot where her food used to be and is just staring at us…  If looks could kill we’d be dead and she’d be in a cat shelter…  Thankfully the lack of an opposable thumb means that we survive her disapproval for another day.

Another large part of the reason we’re having trouble tonight is that in the morning we’re having a couple from a local woman’s support network come and assess us for potential inclusion in their services.  It was one of the things that Bob told us about as a way of receiving additional support after-hours – that didn’t revolve around our poor mental health services.  The offer things such as respite care, courses and assistance.  The assessment is to see if they can help us and what we need.  We’re hoping that they can offer something, but it means having two of the team come into our home – something that we’re never too good with.

Better try and go get some sleep…