The Iceberg is Tipping: What Do Survivors Need from Trauma Professionals/Organizations?

By Kizzie, founder of Out of the Storm

Renowned traumatologist John Briere is said to have quipped that if Complex PTSD were ever given its due the DSM would shrink to the size of a thin pamphlet. When I started Out of the Storm (OOTS) in Aug of 2014 there were only three of us. Since then the forum has grown to 5000 members. On average 2-3 people per day join the forum now and 20 plus people read daily as guests. I believe here at OOTS we are just the tip of the iceberg and when it rolls over a staggering number of trauma survivors in need of support, treatment and services will be revealed.  

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Survivors and their families need more accessible, relevant, and lower cost trauma-informed treatment, services and support.

Since OOTS started one theme that pops up regularly is a degree of frustration by members around the world with not being heard by mental health practitioners, physicians, social workers, health insurers and others involved in helping us. We know many professionals/organizations are working hard on our behalf, but there is more that needs to be done and we can help with that. We are not ‘experts’ in the traditional sense that professionals are, but we are experts when it comes to the lived experience of trauma, and we do know what we need. As such, I thought it would be useful to write a blog article about some of the things survivors have spoken about over the years. This is just a beginning list of needs/wants that I have taken notice of since 2014, there may be more articles in the future to cover other needs.

An ‘official’ diagnosis

Complex PTSD has not yet been included in the American Psychological Association’s Diagnostic and Statistical Manual and has only very recently been included in the World Health Organization’s International Classification of Diseases (Edition 11). Unfortunately, the proposed definition in the ICD-11 focuses on more extreme traumatic stressors (torture, rape, physical abuse), and does not include less obvious forms of trauma such as emotional abuse. This is a crucial omission given that disturbances to one’s sense of self contribute to the development of the three additional symptoms of Complex PTSD.

Complex PTSD is not the same as PTSD; it involves three additional symptoms related to disturbances in one’s sense of self.

In any event, while some medical/mental health professionals are diagnosing patients with Complex PTSD (also known as Complex Trauma), many more are reluctant to do so or are not aware of the distinction between PTSD and Complex PTSD. With respect to physicians this is problematic given they are the front line when it comes to referrals for treatment and services. It can also impact coverage by health insurers, effective/relevant treatment (i.e., trauma informed) by medical/mental health professionals, and appropriate (and much needed) support and collateral services by social workers, lawyers, etc.

Accurate and non-pathologizing/-stigmatizing diagnostic language

Many of us feel the word “disorder” pathologizes and stigmatizes us because it puts the focus on the symptoms we ended up with rather than what happened to us. It does not reflect the fact that we were traumatized by others, by something outside of us. The symptoms we developed are normal responses to an abnormal (traumatizing) situation and the language of the diagnosis should reflect this. The word “response” or “injury” would be more acceptable. It is also worth mentioning here that the word “post” is somewhat misleading given that for many of us trauma is ongoing. For example, abuse by family members often does not end in childhood, it continues into adulthood, creating cumulative layers of trauma versus single/shorter term incidents associated with PTSD. One suggestion is “Complex Traumatic Stress Response” which in addition to being less stigmatizing, doesn’t place the trauma experienced directly in the past.

More trauma informed, lower cost and accessible treatment, services and support

Survivors and their families need more accessible, relevant, and lower cost trauma-informed treatment, services and support.

Access to trauma informed treatment, services and support is quite limited in most countries and not available at all in others. Waiting times for publicly funded assistance are long and private care is too expensive for most, even those who have extended health care given sessions typically cost between $150 and 200. Further compounding the problem of access is geography; typically, trauma informed treatment and services are clustered in major cities. It is worth mentioning here that in addition to a lack of trauma-informed treatment and services for survivors, there is also little in the way of counseling/ support/ education for families. This is important because trauma is known to have a ripple effect into family systems. As the iceberg begins to roll, it is becoming apparent that building trauma-informed families also need to be a priority.  

In addition to the psychological aspects of trauma, there are a lot of data regarding the physical toll it takes on survivors (e.g., the Adverse Childhood Experiences study). This is another reason a more accurate/official diagnosis is required and needs to be pushed out to physicians. That is, the list of comorbidities is long as highlighted in our list of academic research studies here. As such, it is crucial for physicians to be more aware of the damaging and lasting effects of trauma, ask about this in patient histories, and take this into account in any treatment plans.

Trauma can be also be quite debilitating in terms of survivors’ ability to deal with daily living issues (e.g., parenting, working, education, housing, legal matters). Thus, trauma informed support/services that focus on the needs of the whole person are equally important to recovery.  In the USA there is a burgeoning movement to make schools, communities, etc., more ACEs aware and trauma-informed for children. We’re delighted to see this, however, there also needs to be a tangential effort around the world to improve treatment, services and support of/for adults.

More Connection with Peers and Professionals

Dr. Judith Herman first identified Complex Post Traumatic Stress Disorder in 1992 and wrote about the healing power of community:

Traumatic events destroy the sustaining bonds between individual and community. Those who have survived learn that their sense of self, of worth, of humanity, depends upon a feeling of connection with others. The solidarity of a group provides the strongest protection against terror and despair, and the strongest antidote to traumatic experience. Trauma isolates; the group re-creates a sense of belonging. Trauma shames and stigmatizes; the group bears witness and affirms. Trauma degrades the victim; the group exalts her. Trauma dehumanizes the victim; the group restores her humanity.

Repeatedly in the testimony of survivors there comes a moment when a sense of connection is restored by another person’s unaffected display of generosity. Something in herself that the victim believes to be irretrievably destroyed---faith, decency, courage---is reawakened by an example of common altruism. Mirrored in the actions of others, the survivor recognizes and reclaims a lost part of herself.

(Reference: Herman, J. (1997). Trauma and recovery: The aftermath of violence from domestic abuse to political terror. New York: Basic Books)

One simple and inexpensive suggestion is for trauma organizations/professionals to start and facilitate free online support groups like OOTS. Connecting with peers can be very powerful as Dr. Herman suggests. However, it is not just connecting with peers that is important. Online groups that are initiated and facilitated by professionals can reduce the geographic barrier and the isolation of many with Complex PTSD, make high quality psychoeducational materials more readily available to survivors, and may even be used to deliver therapy to reach those who live in areas where trauma treatment is limited or not available. Face-to-face groups are also important in making real world connections.

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It is my hope that this article speaks to the importance and benefits of survivors and trauma professionals/organizations connecting and working together more to ensure that accessible, relevant and effective trauma-informed treatment, services and support are available. It can be as simple as letting us know here at OOTS about a great resource and/or writing a blog article about your area of specialty in trauma research/practice. Or, you can also go a bit bigger and start an online or face-to-face group (or partner with us here at OOTS), and/or, invite survivors to: participate in research/conferences; help develop curricula for professionals, pychoeducational materials for survivors, and/or information handouts for families, physicians, social workers, etc. Survivors want to and should be involved in developing treatment. services and support (i.e., contributors versus consumers).

Thank you for reading and if you would like to connect with us you can email OOTSManager@gmail.com or join and post on the forum.

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Connect with us at OOTSManager@gmail.com or the OOTS forum