Here's the third article I've written that was published in the "Complex Trauma Perspectives" newsletter at ISTSS. The newsletter is read by a lot of trauma professionals so hopefully the articles are helping to get our (survivor) perspectives across.
ICD-11 Complex Post Traumatic Stress Disorder: Language Matters
Complex Post Traumatic Stress Disorder (CPTSD) was first proposed as a diagnosis by Dr. Judith Herman (1992):
The existing diagnostic criteria for [PTSD] are derived mainly from survivors of circumscribed traumatic events. They are based on prototypes of combat, disaster, and rape. In survivors of prolonged, repeated trauma, the symptom picture is often more complex.... I propose to call it complex post-traumatic stress disorder. (p. 119)
Since 1992 the diagnosis has been the subject of ongoing debate by mental health clinicians and researchers, this despite the fact that many accepted its efficacy. According to van der Kolk (2019), in 2013 at the urging of numerous professionals a committee was struck by the American Psychiatric Association to determine if CPTSD was a credible diagnosis. Although it was clear to the committee that CPTSD was and 19 to 2 voted in favour of accepting it into the DSM, it was not included in the 2015 edition. Van der Kolk refers to the decision as "political" and as I wrote in a previous article for this newsletter, this was viewed by many as a form of "institution betrayal" (Smith & Freyd, 2014).
It was not until 2018 when the World Health Organization (WHO) announced it would be included in the eleventh edition of its International Classification of Diseases (ICD-11) that the CPTSD diagnosis became official. The ICD-11 will be published this year, seven years after the APA declined to include it in the DSM and thirty years after it was first proposed by Dr. Herman (1992). It has been a very long wait for survivors in desperate need of validation, treatment, services and support.
Although very much welcomed by survivors, the ICD-11 CPTSD diagnosis is not without its problems. The ICD-11 definition of CPTSD adopted by the WHO (2018) reads as follows:
Complex post traumatic stress disorder (CPTSD) is a disorder that may develop following exposure to an event or series of events of an extremely threatening or horrific nature, most commonly prolonged or repetitive events from which escape is difficult or impossible (e.g., torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse). All diagnostic requirements for PTSD are met. In addition, CPTSD is characterised by severe and persistent 1) problems in affect regulation; 2) beliefs about oneself as diminished, defeated or worthless, accompanied by feelings of shame, guilt or failure related to the traumatic event; and 3) difficulties in sustaining relationships and in feeling close to others. These symptoms cause significant impairment in personal, family, social, educational, occupational or other important areas of functioning.
The first issue regards the nature of Complex Trauma which involves ongoing/repeated traumatic stress versus a single event. It is the accumulation of traumatic stress that leads to the development of CPTSD, while a single incident is more likely to produce PTSD. This is an important distinction to make in terms of understanding the difference between CPTSD and PTSD, especially in terms of treatment.
Second, the events leading to the development of ICD-11 CPTSD are characterized as "extremely threatening or horrific" such as "torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse". There is no mention of more covert/subtle but no less damaging forms of trauma such as emotional abuse/neglect (e.g., narcissistic abuse, coercive control). Sadly, many relational trauma survivors subjected to these more covert forms of traumatic stress often encounter dismissive attitudes and downright rejection of their pain. This must change.
Third, the wording of the diagnosis itself is problematic, starting with the word "disorder". For survivors and professionals alike, it is stigmatizing and pathologizing:
The effects of trauma are indeed just that—effects of an event—and as such are causally related to the trauma and not to the harmed individual. .... when psychology and mental health professionals draw that causal path incorrectly, when the field fails to place the dysfunction solidly on the shoulders of individual and societal wrongdoing, survivors of trauma .... end up shouldering the burden. This, in essence, is pathologizing—the assumption that because individuals exhibit certain sets of symptoms, they are themselves disordered. (Rosenthal et al, 2015, pp. 131-137)
It is crucial that the wording of the diagnosis reflects the fact that survivors' symptoms are normal/natural responses to trauma versus due to a character defect, lack of resilience and/or weakness. Far too often survivors face a "blame the victim' attitude much like veterans before PTSD became more widely understood. This change will impact how survivors are viewed by medicine, mental health, social work, courts, and the public.
Another word in the diagnosis that is problematic for survivors is the word "post". It suggests that the trauma is in the past and yet for many (most) it continues (e.g., ongoing emotional abuse in relational trauma, ongoing racism in collective trauma, ongoing trauma of a natural disaster such as COVID). Wording such as "Complex Trauma Response" (or "Injury") would more accurately reflect the enduring nature of both the trauma and survivors' symptoms.
Finally, an important omission from the ICD-11 definition is the negative, lasting and often life-threatening impact of ongoing traumatic stress on physical health, particularly when it begins in childhood. The Adverse Child Experience (ACE) study conducted from 1995 to 1997 by Kaiser Permanente in the United States revealed the serious health consequences of childhood trauma in adulthood. As Herman (2015) writes "The results were stunning":
....higher ACE scores were strongly correlated with great incidence of the ten leading causes of death in the United States, including heart, disease, lung disease, and liver disease...smoking, obesity, alcoholism, risky sexual behaviour....injection drug use....clinical depression and suicidal behavior. (pp. 257-258)
In addition to improving the definition by capturing the physical impact of traumatic stress, it is suggested that incorporating a clear distinction between relational abuse/neglect and other forms of Complex Trauma that result in CPTSD (e.g., collective/group trauma such as racism; the trauma of natural disasters such as the COVID pandemic) would be beneficial. This would lead to a more nuanced understanding of CPTSD as developing in response to various types of ongoing/repeated traumatic stress that threatens one's physical and/or psychological self.
CPTSD exacts a high physical and psychological toll on both individuals and in turn, societies. Despite this, governments, medical/mental health care, justice and other service sectors are slow to acknowledge and address its lasting and costly impact:
....even though the consequences of adverse childhood experiences constitute the largest public health problem in the United States (Fellitti et al., 1998), and likely world wide, there is enormous resistance to place the care and feeding of developing human beings where it belongs: at the forefront of our attention (Ford & Courtois, 2020. p. 606).
We need to work together to bring those of us suffering from the debilitating symptoms of CPTSD to the forefront in the minds of those in the professional, governmental and public spheres. As a start let's ensure the diagnosis is a compassionate and accurate contextual reflection of how and why symptoms develop. No doubt once there is a wider understanding of just how prevalent CPTSD is and the extent to which it impacts people and societies around the world, the better prepared we will be to prevent, intervene and/or treat it effectively.
References:
Courtois, C. (2014). It's not you, it's what happened to you: Complex Trauma and Treatment. Telemachus Press.
Ford, J. & Courtois, C. (Eds.) (2020). Treating Complex Traumatic Stress Disorders in adults: Scientific foundations and therapeutic models. (2nd ed.). New York, NY: Guilford Press.
Herman, J. (1992/1997/2015). Trauma and recovery: The aftermath of violence - from domestic abuse to political terror. New York: Basic Books.
Rosenthal, M., Reinhardt, K., & Birrell, P. (2016). Guest editorial: Deconstructing disorder: An ordered reaction to a disordered environment. Journal of Trauma & Dissociation, 17(2), 131-137. https://doi.org/10.1080/15299732.2016.1103103
Smith, C. & Freyd, J. (2014). Institutional betrayal. American Psychologist, 69(6), 575–587. https://doi.org/10.1037/a0037564
van der Kolk, B. (2019). The politics of mental health. Psychotherapy Networker. https://www.psychotherapynetworker.org/magazine/article/2368/the-politics-of-mental-health.
World Health Organization. (2018). ICD-11: International Classification of Diseases 11th Revision. https://icd.who.int/en/
That's great Kizzie!!
Thank you for writing that important piece! :grouphug:
Thank you Kizzie! It's a really good article.
Bravo!
Tks for the positive feedback. Let's hope this resonates with the members of ISTSS and we see some changes.