Trauma Survivors As Experts: My Rant

I’ve so wanted the definitive go-to book on how to recover well, quickly and completely from Post-Traumatic Stress.

For two and half decades I’ve read everything I could get my hands on in order to do so.

I’ve worshipped and followed experts the way some follow rock bands. My personal favorites are:

• Judith Herman
• Bessel Van der Kolk
• James Pennebaker
• Christine Courtois
• Bellaruth Naperstek
• Ellen Bass/Laura Davis
• Linda T. Sanford
• Gina O’Connell Higgins
• Sebern Fisher

I just listened to a webinar with Bessel van der Kolk, took ten pages of notes and shared them on this site and I am reading his new book, The Body Keeps Score.

I’ll forever remain curious and interested in trauma research and indebted to those who have worked to get trauma studied, understood and treated. Here’s an interview he did with Krista Tippet that was replayed just this week and which I found powerful.

However, all the best experts in the world – still don’t have super effective trauma treatments – not really – not yet.

While there’s so much promise with neuroplasticity and with neurofeedback and guided imagery and yoga which are all doing boatloads of good – we still don’t have an effective or affordable treatment for developmental trauma or complex trauma or PTS though many say EMDR is close to a “cure” for single incident trauma.

Still, many people are suffering. A lot.

Where is the collaboration between the people who study post-traumatic stress and those who live with symptoms and effectively manage or have/are healed? 

Therapy, by the way, is not collaboration.

Therapy, though extremely helpful, is not an actual relationship (reciprical and voluntary) between adults. It’s impossible when money changes hands. Therapy can be amazing, supportive and even life-saving. And it can be damaging or a waste of time and money.

Providing treatment to and for trauma survivors is not the same as collaborating with them when they are not in crisis.

Providing treatment to and studying the symptoms of trauma survivors is not the same as sitting at a table, brainstorming, think-tanking and discussing what trauma survivors need, understand are living with.

There are so many trauma survivors who are activists, bloggers and advocates who can speak to these topics outside of a clinical or medical setting. We’ve got tips, skills, insights and techniques that help us manage 24/7.

Collaborations between Experts of and Experts with?

I had actually assumed professionals researching complex, developmental or post-traumatic stress must be working with people who have these conditions, outside of therapy, and in partnership.

Then I went to the 2014 trauma conference and NOT ONE trauma survivor spoke (out of more than 30 speakers) or was even heard from.

Not one as a presenter of material or even as a first-hand account or writer or artist. Not one.

Not as a professional or creative or vendor. Zilch.

How were trauma survivors represented?

• as patients, in video clips of them in therapy which were discussed with the group
• by way of drawings done in treatment, made to show where the patient was at
• anonymously, as referenced in comments or journal entries
• and most alarming, to me, as fictionalized composites (sometimes given the name of a researcher’s child for fun) who show what are given fake back stories to make points during presentations

I loved me my experts and this was so shocking and disappointing to me because I had really hoped for the big cure or fix or insight or some secret bit of information that maybe I just hadn’t discovered. This was written about here as well.

My assumption that people with trauma histories and ailments related to trauma are seen as people first and not as patients by those treating us – was wrong.

Ouch.

How isn’t the perspective of trauma survivors not central and crucial at least in part? I’m not saying the research of monkeys and rats is not important, that the studying of PET scans and genes isn’t interesting, but isn’t hearing from trauma survivors, outside of therapy, rather important?

It was so strange. I’ve got to think many of the experts have personal experience and some experience with trauma – but if so – that was kept under wraps.

What is that?

Wouldn’t some personal experience show some credibility and an enhanced ability to “get it?” I’m not talking a personal vent, dump or over-sharing. I’m not talking group therapy demonstrations – just some genuine discussion as a way of expanding and depending and improving understanding of and treatment of trauma?

So-called trauma experts often speak for trauma survivors in books, lectures, webinars and at conferences. It’s what theyd o for a living. I just don’t know how much listening to and speaking with trauma survivors is happening.

To me – this is a significant issue.

I can’t imagine a book about gays written by a bunch of straight people. Would it work for a room full of male OB GYNS to lecture about menstrual cycles, childbirth or menopause? I’m not saying everyone has to live the experience being written about but that personal narrative, self-defined outside of as a patient in therapy, is crucial. A book on parenting via adoption wouldn’t ring as credible to me if none of the authors had personal experience and insight into the process.

Many people have post-traumatic stress. Treatments are often lengthy, expensive and ineffective – especially some of the more traditional trauma treatments – talk therapy and medication.

One might argue that almost anything done to shake up the medical model and traditional approaches would be beneficial.

One might argue that the emphasis on studying the symptoms of trauma (you know, as opposed to preventing trauma which is also great for “curing” the symptoms) might be urgent.

However, one only need attend a trauma conference of international experts to understand how little activism and social context figure in to discussions about trauma or people who have been traumatized. Is this only shocking to me?

I respect, admire, quote and follow the work of Bessel van der Kolk. So, when I read his latest book, The Body Keeps Score and how one veteran he treated was compared with his toddler, I was horrified. He wrote: “Of course, their behavior scared us, but I was also intrigued. At home my wife and I were coping with similar problems in our toddlers, who regularly threw temper tantrums when told to eat their spinach or to put on warm socks. Why was it, then, that I was utterly unconcerned about my kids’ immature behavior but deeply worried by what was going on with the vets (aside from their size, of course, which gave them the potential to inflict much more harm than my two-footers at home)? The reason was that I felt perfectly confident that, with proper care, my kids would gradually learn to deal with frustrations and disappointments, but I as skeptical that I would be able to help my veterans reacquire the skills or self-control and self-regulation that they had lost to war.”

Huh?

Do therapists ever say, “I’m out of my depth. Here’s a refund. I’m not sure talk therapy is even helpful so I won’t charge you.”

Well, maybe Bellaruth Naperstek who admitted to doing so in Invisible Heroes and who then started using guided imagery with trauma survivors because she could see that talk alone not only didn’t help but made people feel worse.

It’s unsettling to me that this one veteran wasn’t treated well and having a doctor with fear mixed intrigue couldn’t have been that healing.

I don’t get it at all.

Photo Credit: Margaret Bellafiore

We’ve got to demand more respect for and better trauma treatment of trauma survivors.

Eventually, trauma experts will take note, get curious and ask what we most want, need, crave.

Eventually, they will stop presuming to speak for us and find out from us and with us what has worked (ex. yoga) when traditional methods have failed.

Even if they don’t, as is already happening, we can take matters into our own hands and speak directly WITH each other!

Social media provides us with places to speak for ourselves. We can get online to end isolation and brainstorm.

We can refuse to be silenced, “protected” by others who decide we should be anonymous or who presume to speak for us as though they can better translate or filter our experiences.

Not only can we speak for ourselves and directly to one another – we can listen too (and without charging $100. an hour).

And we can validate ourselves too. It’s an empowering time. Many are doing fabulous, hopeful and exciting work.

There are groups and people who have been advocating with us for years such as Gift from Within, Bellaruth Naperstek/Health Journeys and Michele Rosenthal/Heal My PTSD/Change You Choose.

There are the shelters and women’s centers and activists and individuals who create solutions that work and fit real lives. There are small organizations of volunteers like The Mama Bear Effect and Report It Girl (ending the culture of silence). I just heard of two women gathering stories about parenting as survivors of sexual abuse today at Trigger Points Anthology.

Plus, there are people Rick Hanson and Cheri Huber, Pema Chodron who make resources affordable and accessible, online, introducing people to Eastern philosophy and Buddhist techniques and positive psychology.

There are ways we can benefit, now, from the neuroplasticity of the brain which make REAL changes in our brains, bodies and lives.

Most importantly, we can honor our own intuition and experience, “trump” what the experts say unless it resonates or serves us and listen most closely to each other and the silent space within.

I’m grateful for the ability to speak directly to and with others who get it, who balance lives and symptoms with hope and a rough to create a meaningful present and hopeful future.

For me, the real experts on trauma are us.