Trauma specialists have struggled for 3 decades to get the cPTSD diagnosis officially acknowledged in the major diagnostic manuals. And they succeeded in the ICD-11. It is a reason to celebrate. But some of the very same specialists who fought so hard are now expressing concerns about the precise diagnostic criteria that were used. While I am not trained in diagnosing people, I can at least explain what is going on and why it might result in problems.
The goal of the ICD-11 diagnostic criteria is to make diagnosis easier.
Criteria for Classic PTSD
To get a PTSD diagnosis you need to report a terrible event.
Then there are 3 categories of experience with 2 options each and you need to qualify for one of them.
- Re-experiencing: flashbacks or nightmares
- Avoidance: thoughts+emotions or people/situations/activities related to the event
- Hyperarousal: Hypervigilance or being easily startled.
To qualify as a disorder, this needs to create suffering.
Criteria for complex PTSD
CPTSD is then treated like it is PTSD with some extra trauma and therefore some extra symptoms:
We need to report long-term or repeated terrible events.
Then the PTSD criteria are repeated, without adapting them to the effects of the different trauma situations. 3 more categories are added to existing PTSD criteria.
- Difficulty with emotional regulation: outbursts of anger or limited access to emotions
- Changes in self-perception: low self-esteem or deeply rooted patterns of guilt, shame or worthlessness
- Difficulties in relationships: problems to keep up relationships or problems to feel close to others
This is likely going to create problems and there is a possibility that it can fail patients who have, what is originally meant by ‘cPTSD’. They might not be able to get this diagnosis even though they absolutely experienced repeated, long-term traumatization. A lot of people with more severe trauma don’t develop classic PTSD. That is the whole point in establishing a new diagnosis for them. CPTSD is not just PTSD with some extra symptoms.
Traumatizing events
It is likely for people with cPTSD to have no memory of traumatizing events because we have amnesia. We experience symptoms and we might have no idea why they are there. We also often grew up in circumstances that were ‘normal’ for us and we will fail to report abuse because we cannot recognize it as such. And things that happened very early in our life cannot be remembered like a story we can tell. Having to report several traumatizing events can get some people with cPTSD into a tricky situation. Just because we can’t report it doesn’t mean it didn’t happen. This is especially true for people with structural dissociation who usually belong in the cPTSD category.
Re-experiencing
A lot of people with cPTSD don’t experience classic flashbacks. They were too young for their brain to develop a coherent memory that could be re-experienced. Or the memory is so fragmented that the things that do come up cannot easily be identified as flashbacks. The criteria mention emotional and physical distress that accompanies the flashbacks. In cPTSD they can make up the whole experience. We have emotional or somatic flashbacks, not complex memories. These will usually just be seen as ‘difficulties with self-regulation’ and conversion symptoms. They can be the main way re-experiencing happens for people like us and it can very easily be dismissed as not being typical enough for PTSD. People with structural dissociation can be so far removed from inner parts who are stuck in re-experiencing that they are simply not aware that it is even happening.
Avoidance
A lot of people with cPTSD don’t avoid things that are related to trauma. We are so chronically dissociated that we walk through the world barely noticing when we get hurt. Because we tend to reenact the things we dissociated from awareness we have a tendency to seek out triggers and trauma situations to repeat them. That is absolutely classic for cPTSD. It is like our inner compass is numbed and confused and we just can’t navigate trouble enough to avoid it. We developed an intense ability to endure everything and we walk though reminders of trauma, keep our head down and our brain in a fog and we just endure them without changing direction. It is not unusual to have way too little avoidance, even when it would be normal and healthy people would avoid the situation at all cost. Avoidance is just not a key pattern here. In cPTSD we replace avoidance with dissociation as a key element.
Hyperarousal
PTSD comes with a predictable pattern where people are fine, then they get triggered and therefore dysregulated and then they somehow manage to find balance again later. In cPTSD we see chronic dysregulation but it is usually not chronic hyperarousal. Both options named in the criteria are signs of hyperarousal. We, instead, will be in chronic hypoarousal. Where we are so shut down that we don’t notice the threat anymore. We are hypovigilant. Being startled does not cause panic, it causes more dissociation. The way our dysregulation works is not in loud hysterics, it is very quiet and easy to misunderstand. Because we are facing a PTSD mindset here, we might get overlooked, even if we show all the signs of chronic dysregulation. It is the wrong kind of dysregulation to match the criteria.
When we deal with structural dissociation it is possible that none of the dysregulation is visible at all. Our ANPs look normal, that is the whole point. Nobody can see that there are stress responses happening inside. It is yet again a situation where the people with the most severe cPTSD might end up being dismissed because they don’t qualify for PTSD symptoms.
If complex PTSD was just a severe form of PTSD it would not have needed an extra diagnosis. It is fundamentally different from PTSD in the way that symptoms are experienced. It is not PTSD with extra symptoms. ‘Complex’ is supposed to express that there is a lot more going on and that it is tricky. Some say complex PTSD shouldn’t have the term PTSD in it at all. Calling it a ‘complex trauma disorder’ would be more accurate. The new criteria have the potential of excluding the very people they were made for.
I will not recommend that you lie to your Ts about your experience. They need to know what is going on to be able to help you. But it might be important to point out where the criteria fail you and how you experience a cPTSD version of them. The Ts who are experienced will know that you speak the truth and describe something very typical. It can get tricky with people who are new to diagnosing who cling to the literal options given in the ICD-11. They are not ideal. We are getting there. Having cPTSD in the manual at all is a win. Now it might only need 3 more decades to get it just right…
A diagnosis does not exist for its own sake. It is meant to lead to the right kind of treatment. As we have seen, cPTSD is not just a form of ‘more severe PTSD’. It is time to develop treatment options that are not just ‘more severe PTSD treatment’. Confronting the hell out of people who might not even have classic flashbacks or avoidance patterns is not a particularly wise approach. It misses the point. The key problems lie elsewhere and exposure doesn’t solve them. Research about cPTSD treatment is thin because people like us don’t fit into simple study designs and science is dramatically under-funded. But we need these studies to avoid mistreatment.
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