I’m pretty grumpy with the panel that gets to decide on the DSM. Mostly because of this little bugbear called C-PTSD, or complex post traumatic stress disorder. Or DESNOS which is another working title that holds weight (disorder of extreme stress not otherwise specified).
The complex type was under consideration within the DSM IV. It was listed as a field study – a potential diagnosis that would be researched for inclusion into the next version. All well and good – more people became aware of the concept and started to look into it – there is plenty of research out there to read if you are so inclined. However, when it came to the crunch the panel who make the decisions decided that as 92% of participants who met the criteria for C-PTSD/DESNOS also fit the criteria for classic PTSD it wasn’t really necessary. Otherwise known as, close enough. The PTSD criteria has been slightly expanded, though in my view not nearly well enough to cover complex PTSD and further adds to the vagueness around the disorder.
What about the other 8 percent?
I care about the other 8 percent. On both a broad and individualistic level. Close enough is not good enough for those people. Who knows how many of these people will be lost to tragedy not of their own making? Who knows how many 8 percent may actually represent?
A lot of these people will end up with inaccurate diagnoses – and yes it DOES matter. Their lives are a mess and they have no idea what the hell is going on – and they will be told it’s all YOU. Just like they are scared of in the first place.
A common misconception that is thanks to the literature that originally defined C-PTSD is that it is basically the same as borderline personality disorder (BPD). Many others have confusing ups and downs that make no sense and don’t fit with what is going on in their lives – and they get to be the lucky ones diagnosed with bipolar disorder. Others will be identified with another personality disorder – depending on the most pervasive symptoms (you could conceivably diagnose an unaware sufferer of C-PTSD with narcissistic, histrionic, avoidant or even antisocial PD’s). Otherwise you’ll end up with a laundry list of labels to try to cover all of your symptoms – this, I think, is a common choice. You’ll end up with multiple PD’s, traits, mood disorders, OCD, anxiety issues and so on. When in reality, a diagnosis of complex post traumatic stress disorder would be one label for EVERY SYMPTOM YOU HAVE.
The inherent issue with a PD is that it is stigmatising, some are viewed as untreatable, and in countries that are not this one, insurance will not cover treatment. It’s the ‘lost cause’ catch-all of confusing symptoms, difficult patients and lack of explanations for behavioural choices.
This is dangerous.
If you end up on the bipolar bandwagon you’ll get the fun ride of the medication mess. It might help a little, with some things, but you’ll find it doesn’t quite make life ‘right’. Too many cases of people taken on a ride through the entire list of bipolar medication options – with sometimes serious repercussions on their health – exist for this to be an OK ‘back up’. PTSD – of any type – needs psychotherapy NOT medication. That is not to say some medications don’t provide relief or assistance – but to be hung up as just needing medicine forever? No, that is unfair.
When I say it lays blame for the problem squarely on the sufferer I mean this. PD’s are possibly genetic, possibly biological, possibly reactions to situations, attachment issues or something similar. The problem is with YOU the sufferer. You didn’t do this right, you have dodgy genes. You didn’t react properly. You, you, you. It’s all your fault, somehow – and someone with C-PTSD will find a way to make it their own fault (or another reassurance, another reinforcement and another piece of evidence they are inherently defective human beings). Bipolar is a problem with YOUR chemistry. Same thing.
People who are actually ‘broken’ like this are often quite ok about it – there is a relief in knowing what it is. I know with my own struggles when I was diagnosed it was so good to know it wasn’t just that I was more stupid than I thought, something was actually wrong with me that explained everything. I think this happens when you find whatever diagnosis that is true and real.
However to have a professional say yes, you are broken – to someone who has always had this seedy doubt about their worth and feels like that is probably their main issue – in a self-judgement way, not medically – then you’ve just added to their trauma.
The relief when someone says OH MY GOD C-PTSD! is incredible, I believe. It opens doors you didn’t know were there. It opens reasons that have NOTHING TO DO WITH YOU. It opens tools and processes you can use to get better, to make life work for you. It opens your mind to the possibility you are NOT DEFECTIVE.
Currently this is only available to those people who may happen to either fit or have a therapist who can stretch their symptoms to fit the diagnosis of classic PTSD. And that is not ok. For every person that has that there are others who are told they have bipolar disorder, or a personality disorder, or some other ‘official’ diagnosis.
C-PTSD has some treatment options that differ to the classic type and also other illnesses. There is some crossover but there are also some big differences.
I think the first step with this disorder is to pull apart what is NOT. Find all the ways that it is DIFFERENT – not similar to or the same as – classic PTSD or other choices in the DSM. If you want to see if it’s ‘similar’ to other things, then sure you’ll find it – and this seems to be the focus the study in the DSM-IV has taken. It was pointing the wrong way and now 8% of sufferers are left hanging. You may think it is statistically insignificant but wait until one of those 8% is your mother, father, husband, wife, son, daughter. It’ll matter then – and it’ll matter that nothing else seems to quite cut it.
There is a lot that can be found that is different here, and it is those differences, not similarities, that should define it – its criteria and its acceptance as a genuine option. I don’t need to go into them all here – a quick google search can bring up comparisons between C-PTSD and PTSD, or BPD or other illnesses. I suggest you look at them closely if you have any of these diagnoses or if you are still looking for what the hell is going on inside your head.
You wouldn’t say that because bipolar has depression, it’s ‘similar’ to depressive disorders and is therefore unnecessary. Would you? Well whoever wrote the DSM didn’t. Just one example – you’ll find many that show similarities between disorders that is not necessarily relevant. Why do we have Bipolar I and II? They are similar, and yet both exist. Not to mention bipolar also looks like BPD – so why have both options?
It’s a poor argument and one that is going to restrict recovery for a lot of people who don’t work it out on their own, with a therapist prepared to look beyond the diagnostic manual or a psychiatrist who isn’t prepared to just medicate away the symptoms. Or a partner, friend, child or parent who does the digging.
This is a huge mistake.