"What is most striking about how therapies are developed and implemented in PTSD-land today is how rarely one actually hears what patients think about it at all" wrote David J. Morris in The Evil Hours: A Biography of Post-Traumatic Stress Disorder
"If they are mentioned at all, they're spoken of as 'subjects' or 'female sexual assault victims' or, most often, merely as numbers, as n=246" he wrote.
I noticed this same clinical distance when I went to the trauma conference in Boston last year where there was not even one self-identified trauma survivor speaker, vendor, researcher or even a survivor. I'm sure some of the people present were survivors too, but the survivor perspective was not shared at all.
It was true too in the Bessel van der Kolk's book - The Body Keeps Score. He's a brilliant man and I've followed his work the way some follow rock bands. While his book was filled with fascinating research and information it was also totally off-putting because the only trauma survivors quoted were quoted as patients - not just people.
It's an important distinction.
Trauma survivors, even those who go to therapy, spend far more time out of a therapist chair or office. Isn't how we think, feel and cope with trauma symptoms in our real lives at least as important if not more important than what we share in therapy? That hour doesn't tell even close to the whole story of actual lives lived. It's not where we love, parent, work or pay bills. It's not where we navigate our trauma symptoms in real time.
I can't wait until survivor voices are considered essential at a trauma conference. Where is the lived experience of survivors as real-life people when not in pain or in crisis? Would you want to learn about good health from doctors who only see sick people or about strong teeth from people who only treat gum disease? It's a valuable perspective but it's just one. How did it become the mouthpiece for the survivor's experience?
Where are the survivors who are doing well in life, or who have ups and downs, who find approaches outside of therapy helpful? Where are the self-identified survivors who are also doctors, writers, activists, lawyers and parents sharing what has and hasn't worked?
These are the voices I most want to hear.
I hope some day there is a think tank between trauma survivor treatment providers and the ones considered "experts" and those with a trauma-related experience or diagnosis.
Could we have conversations, as peers and equals, at a table and not only with the power dynamic of being in need or crisis and in therapy?
Don't get me wrong. Talk therapy can have great value for many, for a short time or a long time. But it's a service and not a conversation. It's a business and a helping profession too but it's not possible for it to be a dialogue, a back and forth or a real relationship.
Wouldn't therapists like to know the parts of therapy that are less than optimal? It's not like someone paying $100 an hour wants to share with a therapist in their premium time what's a total miss or isn't all that great. Not usually.
I'd love for the therapeutic community to ask survivors questions at these conferences such as:
What do you want and need that you aren't getting?
What would be helpful support?
What parts of current treatment models are ineffective or frustrating or not working?
What parts of life are most troubling, most tricky with a history or neglect and abuse?
Remember all the prevailing wisdom that said one had to "feel it to heal it' and many of us were re-traumatized? I didn't get a talk therapy recall notice or a refund. Did you?
Pardon me for being suspicious.
Trauma impacts the body. Oh, that's news?
And how many of us on our own found yoga or body work before the professional trauma community was in favor of that just because we knew and felt it worked? Many of us were told that could be dangerous or too difficult or we'd need a special kind of trauma-sensitive only version for us because we're so fragile. I'm not saying trauma-sensitivity isn't good (in yoga or elsewhere) but sometimes it does not add extra safety. Sometimes it makes people feel more damaged. And for me, the most beautiful trauma-sensitive practitioners are the ones who share their survivor status and use "we" language and not - you patient. Me healer.
How many of us said, "Actually, this or that medication doesn't work" before the professional trauma community was listening? How many said, like I did, "This causes weight gain" and was told to eat more fruit and then later, "That causes weight gain." Or how many asked where are the support groups or guidance for going off medications or weaning? I was told "those" internet sites are not good but given no other alternative.
Wouldn't more dialogues like the kind that happen some on Gift from Within be good for the field? Those with trauma symptoms and those treating the symptoms should be on the same team, right? I'm not sure why that is the exception rather than rule.
It's so startling to me because so many of the people giving talks at last year's trauma conference shared how ineffective most treatments are, how some, like talk therapy, have made people feel worse and how terrible so many people are doing.
There was not one table of vendors with people with PTSD talking or sharing about what it's like to live with or manage trauma or traumatic stress. I mean not once in a four day conference. Might this be part of the problem?
Again, I'm sure there were many survivors present and that many of the therapists and scientists are survivors. But they didn't self-identify and spoke of patients in the same way they spoke of the rats and mice and monkeys studied - as subjects.
Does that mean they have shame? It's unprofessional or damaging to a career to be a survivor and a therapist (though we all know that's not exactly uncommon).
To me, who has admired experts and their work for more than two decades I was shocked and disappointed. And honestly, I felt insulted too.
There were speakers at the trauma conference who created fictional composites of patients with made up names (in honor of their own children at times) to make points. I kept thinking, "There's not one real survivor who can speak for him or herself? Are you kidding me?"
There would be art work of patients or even writing, but anonymous. And even in video patients were shown - I assume (and hope) with their permission. Why not have them present to speak for themselves? Were they even asked.
And yet, to raise criticisms as a trauma survivor, of the medical model isn't always met with warmth. To say, "I have PTSd" and "I have problems with the medical model" means it's easy to be dismissed as a crazy person with issues.
Or, people dismiss concerns as just "crazy."
To date, I have the only negative review of The Body Keeps Score on Amazon. I don't even have only
negative things to say because it's an important work. What I said is the book is alienating to me as a reader who is a trauma survivor. Half the people attacked my negative review and another half supported it. I don't care if people disagree with me but to be dismissed because I have a history of trauma was troubling.
Wouldn't the fact that I have tried many of the treatments for trauma, as a trauma survivor, make me more and not less able to review the book? I was speaking from my own perspective only and even that was questioned - what will the trauma history. I don't see my being a trauma survivor as making me unable to have critical or affirming thoughts about research or treatment approaches. I was giving an opinion review. It doesn't have to be agreed with but opinions and feelings aren't up for debate.
If there were more collaboration collaboration between trauma survivors and trauma experts (I personally do consider trauma survivors experts) - wouldn't this be good for all who want more effective trauma treatments?
Morris touches on this whole topic in his book and how with PTSD there really are no consumer-rating systems or surveys of what therapies do/don't work by the people getting them.
Imagine if companies like Apple never had to hear the responses or complaints, what people do and don't like about their product? Many of us are mental health consumers but our voices have little sway and representation in the places where therapies are being developed and explored and discussed.
In the Body Keeps Score, van der Kolk wrote about this rule he "for my students: If you do something to a patient that you would not do to your friends or children, consider whether you are unwittingly replicating a trauma from the patient's past."
I'd have to say, speaking for patients and trauma survivors as is so often done in the book and at the trauma conference - to me - does not honor that rule. Friends and family members generally don't take well to being spoken for when they can speak for themselves but this happens all of the time in the medical model that treats trauma primarily as a psych issue.
On a brighter note, the reason I didn't feel my money was wasted at the Trauma Conference is that it is where I learned abou the ACE test and study. It was referred to offhand as in - you should all know about this if you don't - there's a calculator even online or something to that effect.
Now I do and it's empowering.
There are places where openness, information and resource sharing are valued. There are places where the sharing of thoughts, ideas and practices which actually help people in real life living with traumatic stress and high ACE score issues is prized.
This site is a needed change because it allows dialogue between people. The experiences of living with, working with, loving and being people with developmental trauma, neglect and household dysfunction is shared and valued.
I hope, in the future, the valuable wisdom and experiences of trauma survivors can be shared openly and where treatment providers hear from trauma survivors as peers, colleagues and teachers, not only as patients.
I just can't believe that experts we pay so much don't want to listen to what we have to say when we aren't their patients. We can pay them to listen but that doesn't mean we will be heard. Our voices are dismissed rather than invited or included. This was actually shocking and disheartening to me. It must change if we are to find, create and benefit from more effective and affordable treatments of trauma symptoms.
Christine Cissy White
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