Complex PTSD

This is my explanation of PTSD and C-PTSD and what these diagnoses mean to me

My Kestrel was diagnosed with PTSD whilst in foster care, and when we went to a therapy centre some time after she moved to live with me, they amended that to Complex PTSD. Rhea was also diagnosed with PTSD.

Complex PTSD, unlike PTSD, is not a diagnosis which is recognised by all. You can read about it on the Royal College of Psychiatrists website, but it’s not a diagnosis in the DCM or ICD for instance. However the therapists were pretty sure they weren’t ‘just’ seeing PTSD, and I agree. I read up on Complex PTSD and it ‘fitted’ Kestrel much better than ‘simple’ PTSD did.

So – What is PTSD and what is Complex PTSD?

Following one or multiple traumatic events, it is normal to experience a stress reaction, which may include flashbacks, hypervigilance, depression, numbing etc. The brain should process the memory and as it does so, the stress symptoms should reduce and then go away. This happens over the first weeks and months. However, if the symptoms are present at least 6 weeks after the event, and are not getting any better, that can be a sign that your brain is not processing the event. Stuck in the stress state you were in at the time or shortly afterwards, you keep experiencing the symptoms and they cause a lot of disruption in your life. This is PTSD.

Symptoms of PTSD (these are all things I have observed in my children)

  • Hypervigilance and constantly being on guard
  • Flashbacks, which may happen when awake or as nightmares when asleep
  • Dissociation
  • Strong reaction to any ‘triggers’ which are reminders of the traumatic event
  • Problems sleeping, concentrating, feeling very irritable and angry
  • Decreased ability to feel certain emotions

Other symptoms of PTSD which a person might experience include depression, strong avoidance of anything to do with the traumatic event, muscle aches, headaches and other physical problems.

Children with PTSD may also have academic problems and disruptive behaviours and feelings that they won’t live to adulthood.

Complex PTSD is defined as being caused by not one, but always multiple traumatic events over a prolonged period. Child abuse is the example most reading will give you. In Complex PTSD, some symptoms are the same as PTSD (Dissociation and hypervigilance for instance) but Complex PTSD has other symptoms which seperate it from PTSD. A core problem in C-PTSD is:

  • Lack of trust in the world and the people in it

Well this just describes my Kestrel in a nutshell. C-PTSD is very strongly linked to attachment difficulties, and especially a disorganised attachment style (attachment and attachment styles is a whole ‘nother post, because although all these issues are strongly interlinked, they all need lots of words to explain them!) as well as Borderline Personality Disorder.

Now, I’ve found that Wikipedia has a rather good description of the symptoms of C-PTSD in children and teenagers (who knew?!). To summarise it, there are 7 different areas of problem to look for when thinking about Complex PTSD

  1. Attachment – The lack of trust, problems with boundaries, forming relationships, lack of empathy, poor social skills
  2. Biology - This includes sensory motor problems, sensory integration problems, and the headaches/muscle aches and somatisation (where stress is experienced as physical problems which have no cause other than stress) you can also observe in PTSD
  3. Emotional Regulation - As it says, difficulty regulating own emotions, also difficulties identifying, communicating and expressing emotions, emotional numbing (as in PTSD)
  4. Dissociation - Kestrel dissociates a lot, and in different ways – her dissociation can include amnesia, believing herself to be 2/3/4 years old again, or going into a wild agressive frenzy (all like i described in my poem about one of her dissociative episodes). Other kinds of dissociation you might see with C-PTSD include the ‘drifting-on-the-ceiling-watching-yourself’ experience, and having multiple selves
  5. Behavioural control - Problems with impulse control (Kestrel has major problems with impulse control), aggression, anger and sleep difficulties (also might be seen in PTSD)
  6. Cognition - Difficulties with executive functioning skills (these include planning and judgement), difficulty focussing, problems with ’cause and effect’ thinking, problems processing new information, and language and communication difficulties.
  7. Self concept - This might include having a deep sense of shame and guilt (like lack of trust, I was told this symptom is another big one for C-PTSD), low self esteem and distubed body image

Now, taken all in all, this describes my Kestrel much better than PTSD does, including a lot more of her issues. Now, it’s not possible for me or for anyone to say that all these problems she has were definitely all caused by the trauma she experienced – she was exposed to a lot of alcohol in-utero and we know that FAE/FASD’s also cause a lot of these problems (eg. with cause-effect thinking and executive functioning skills). Also, some of her behaviour may well be just ‘how she is’ and partly her inherited personality that she was always going to have. In her life she has been diagnosed or assessed for attachment disorder, sensory integration disorder, foetal alcohol affects, global developmental delay, PTSD and Complex PTSD and learning difficulties…now, that’s a lot of stuff. Basically, she has a bucket load of issues, and what we should actually call that is up to the personal opinions of different therapists, paediatricians and psychiatrists!!

I personally am pleased we were able to get the diagnosis of Complex PTSD, not just because I am convinced that her flashbacks and so on are indeed PTSD, but simply because it does catch a lot of her other problems under one umbrella. For instance her attachment isues are one of her problems, sensory issues are another, then her PTSD symptoms are another…if all of those problems are assessed individually, then you wind up with a whole rack of diagnoses – PTSD, attachment issues, FAE, sensory integration disorder etc…but none of those individually are very complete. Whereas Complex PTSD catches MOST of those issues under just ONE diagnosis (leaving aside her Learning Disability and some of the effects of alcohol in-utero)

Saying my daughter has Complex PTSD and a learning disability is much simpler than trying to reel off 6 different diagnoses, which tends to make people switch off and get extremely confused (that makes me angry but again, whole ‘nother post!). Of course, most people have no idea what Complex PTSD is, but then i can explain. Explaining Complex PTSD is easier than explaining 5/6 things individually as well.

I did have someone ask me why be happy with a diagnosis when it might not be fully correct. Well, I’m happy with C-PTSD even though I know that some of the ‘symptoms’ she has may not be caused by neglect, abuse and other traumas she has experienced. Why? Because realistically, it’s completely impossible to work out what is caused by what. What’s innate, what’s alcohol, what’s trauma…no one can pull those apart. There’s no clear distinction betweem them anyway, since trauma can make some of your innate personality traits much more prominant. So I’d rather be able to explain a lot of her behaviours and emotional and physical difficulties as “The effect of prolonged abuse and trauma” (ie. C-PTSD) and leave it there.

The important thing to my mind, is after getting the dx, getting the help and therapy so that some of my childs more distressing problems can be addressed.

What is it like to live with a child who has Complex PTSD? That is again, a topic for another post, but one I hope I can write sooner rather than later.

I’d like to hear from people, or parents of people who have PTSD or C-PTSD, or people/parents who suffer from secondary PTSD/trauma because of their childs issues

Also I’d like to get people’s opinions on getting diagnosed – people’s opinions do vary wildly on when they think you should seek a dx, how useful a dx is, what they are looking for in a dx, or even whether a certain dx really exists or not! I welcome any respectful debates.

 

 

 

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3 thoughts on “Complex PTSD

  1. Hello!

    I had (have?) c-PTSD as a result of chronic neglect and other traumatic childhood experiences. I have never been diagnosed, partly because of the c-PTSD (a severe lack of trust in people). By the time I actually sought therapeutic support, diagnoses were a moot point. Whatever label you put on it, I was suffering.

    As an aside, I didn’t gain anything from counselling or CBT. Most of the healing of the childhood experiences and the PTSD was done on my own, through years of dedicated research and self-work (especially mindfulness meditation). This was augmented in later years by psychotherapy (which focused entirely on enabling me to trust another person). And now I am doing CAT which has been extremely productive. CAT would not have been this productive without the previous psychotherapy, without my current medication, and without all of the work I did in the previous years. My recovery period is so, so, so much shorter now. The PTSD reaction to triggers is still there and still has an impact but it is no longer so disabling. Whereas in the past it used to take me years, months, then weeks to get stable after I was triggered, now it takes days or hours. I used to dissociate all the time. Now I can sit with all sorts of strong emotions without dissociating. I cannot begin to describe how amazing it is for a chronically dissociated and terrified child to be emotionally present, even just some of the time.

    To be honest, no one knew how how I suffered back then, and no one would ever guess when or how I suffer now. I work very hard to maintain stability and to improve, and I have to because I can rarely predict when the PTSD reaction will trigger. There is no point in poetic angst about ‘why me’. In the words of a wise teenager, ‘I don’t have time for that shit.’ =) It is what it is. Complex, yes, but possible to manage.

  2. Hi :)

    Thank you so much for sharing your experience. I have to say, you have given me some more hope for my Kestrel :) It’s hard because I normally hear stories from parents whose children (who have basically the same kind of issues as Kestrel) are now as old as Rhea is, but are very deeply troubled adults (few relationships, children in care, addiction, prostitution etc). And since Kestrel still does really struggle, I need to hear more hopeful things sometimes! I have to hope things can get better for her.

    Kestrel was initially seen at CAMHS, but was then referred to a more specialist centre which deals with LAC/adopted children. They supported me as well as Kestrel (so I had meetings on my own with K’s therapist, and they had a support group). K and I did sessions based on Dyadic Development Psychotherapy to try and help with attachment/trust and then K had EMDR therapy. I know the centre does CBT, theraplay and a few other things like that, but we never took part in those. Rhea has had CBT as an adult and found it helpful but she’s a very different person than K is, I don’t think K would have benefitted from CBT at that time.

    Anyway…I found the therapy has had an effect. We are in a better place after it, than we were before it. That’s not to say it’s been a miracle or life changer though! No major miracles here. She still dissociates, still has many triggers, and still has problems with trust and behaviour and so on. But the frequency of her dissociation episodes decreased and the therapy did help get rid of a couple of certain behaviours she had which made life a bit easier. I know it has helped our attachment.

    K has also had medication in the past, and she’s on it a medicine (Risperidone) now. The medication does help with her aggression (not just physical but verbal and her general manner), her rages are less frequent and don’t last as long. She is calmer and less anxious. I’m very pleased that she’s on it.

    I’ve not heard of CAT, can I ask what it is?

    Again, thank you so much for sharing. It’s so rare to actually hear from people with CPTSD (or other things) themselves, normally I’m only able to talk to parents whose children are affected.

    • My main advice for anyone seeking recovery is that each person has a different journey because we all have different strengths. CAT is cognitive analytical therapy. It is the right therapy for me because I am very analytical. I already was working in a CAT way on my own. It is helping me to identify more patterns in my triggers and behaviours, so that I stop shooting myself in the foot, relying on behaviours that are no longer keeping me safe (and maybe never did).

      But this sort of therapy is only productive once we have a “secure base” aka sense of safety. It was very very very hard work getting to a place where I felt secure enough to engage in therapy. I had no sense of safety, because of the chronic neglect and abuse. I was terrified all the time, and I didn’t have the emotional intelligence to even recognise Iwas scared.. I cannot even begin to describe how many years I worked to get a feeling of safety, and mostly because I had no idea what i was working towards! For most of it I really doubted whether I was making any progress. It would have been easier were I able to trust others. But then if I was able to do that, I wouldn’t have needed the therapy in the first place. ;-) the thing about chronic neglect and abuse is that it blinds you to the point where you don’t realise you are even blind. That’s the cPTSD.

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