What I'd Like Kizzie to Speak About at the Trauma Summit is ...

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Kizzie

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I've been asked to speak at a virtual Complex Trauma summit in March 2021 and have decided on the title "A Seat at the Table: Learning from the Lived Experience of Complex Trauma Survivors".   I don't have a lot of info about it but I believe the main attendees/participant will be trauma researchers and clinicians although I think they may also be inviting not-for-profit trauma organizations and other service providers. 

In any event, between now and Feb I'd love to hear what you think is important for me to speak about. This is it's an opportunity for us to raise our voices collectively and let trauma researchers and clinicians know about our needs/wants.  So if you could complete the sentence, "What I'd Like Kizzie to Speak About at the Trauma Summit is ...", that would be really helpful - tks!

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Barney

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #1 on: August 18, 2020, 07:09:24 PM »
 The actual nuts and bolts of reregulating dysregulated state(s)... not the psych/clinical...but how we actually do it...minute by minute...

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Blueberry

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #2 on: August 19, 2020, 06:23:37 PM »
Sounds great, Kizzie! I think I'll need a while to come up with a comprehensible suggestion, but I see I have till Feb. so I'm sure I'll manage by then.

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woodsgnome

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #3 on: August 20, 2020, 02:03:16 AM »
Hmmm ... that is a challenge but also an opportunity to share something about what's almost impossible to share: what this condition is really like on the inside, beyond the clinical lens which only sees 'us' as a problem to be fixed, when we see 'us' as ordinary people lost in an unending maze of mysteries and too much potential misery.

Yet somehow we're still looking about for a way home ... to ourselves, to beauty, and some sense of worthiness we can know for real.

Thanks for the notice, Kizzie; as Blueberry noted, there's at least some time to think on it. It's tricky, though; as many of us will hang back waiting for the 'perfect' time and theme to chime in on.

One key word for me has always been the complex part -- it's like when one part (or trauma) is pushed down, sure enough another pops up somewhere else. It is all so complex. And tiring. And more open to hopelessness than we should have to have. And won't go away.

   :spooked:    :Idunno:

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Blueberry

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #4 on: August 20, 2020, 11:17:34 AM »
Wise words, woodsgnome. Hitting the nail on the head afaic.

One thing though: I won't actually be waiting for the 'perfect' time. Instead I'm giving myself some time for as yet unknown stuff to come up, turn into feelings and then be put into words. That will happen but I do need some more time and emotional space, and even just a time when I can put other things to one side. The latter will come before Feb. no problem.

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Kizzie

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #5 on: August 20, 2020, 03:30:23 PM »
It can be about any aspect of CPTSD from language (relational trauma response better describes our symptoms, & is less stigmatizing and pathologizing), to the difficulties so many of us have finding therapists, doctors, and other service providers who know about CPTSD and are in proximity to where we live, to being able to afford therapy, to the struggles we have managing CPTSD and our other roles in life (parenting, studies, work), and so on.

Some prompts:

Why do we need a seat at the table?
What treatment, services and support do we need and how might we work together to get these in place?
What can they need to learn about us that therapy sessions or research studies haven't revealed? 

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Snookiebookie2

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #6 on: August 20, 2020, 05:26:54 PM »
Hi Kizzie

I think it's amazing that you're going to speak at this event. Testament to all the work you put in.

Some of the things that spring to mind are....

What's  in a name - what we should call this condition that fully reflects the nature of it.  C-ptsd never seems a good fit.  I always feel like the poor relation of those with PTSD. Why it matters to have an appropriate name.

What can be done to have this recognized as a diagnosis and the importance of diagnosis as a gateway to APPROPRIATE treatment - both in system that use insurance and in state funded health services.

What can be done to circulate information.  Information about the nature of this condition to experts and others in the health service. And information for those diagnosed including treatment options and self help tips. 

Research.  What work is being done. Where can we help researchers to help ourselves

One of the things that I'd personally speak about is exactly how it feels to have this condition.  The pain and turbulence.  I'd speak about the disorientating symptoms of dissociation and emotional dysregulation.  I'd try to explain how it is to carry around my corrosive inner critic and soul destroying fear.  I'd want people to see the damage reeked by trauma.  Then I'd request they help, with research and strategy and understanding.   To work to help heal those who suffer and to kindly protect and prevent this happening to anyone else.

Hope that is what you're looking for. Sorry if it's off track or utter nonsense.

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Whobuddy

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #7 on: August 29, 2020, 03:19:41 PM »
I have given this much thought and I think what I would like clinicians to know is something like this:

After having been to several therapists for symptoms stemming from childhood abuse and neglect, I have noticed that they often are too far entrenched in one end of the spectrum or the other. What I mean is that some quickly give a cut and dry diagnosis and prescription for treatment such as EMDR, meds, or similar and others go to the other extreme of "client-led" therapy and they do little other than listen. They need to find the middle ground. We are all so very different in our unfortunate experiences, how we responded, how we coped, and where we are presently.

But one thing that is certain - we mostly don't know what is missing, what we missed out on, and we likely don't know how to heal ourselves.

What helped me the most was learning (and it was a long process that is still going on) how to determine what I am feeling. And slowly, that came into focus, and now I can combine how I am feeling with the present reality and this helps me decide what to do. This has been a long path that was not in any way linear.

Once a therapist told me "It is amazing that you survived and that you function as well as you do." I answered, "I just heard you say I shouldn't have survived and I am not functioning very well." That seemed to help him understand what goes on in my mind better than all the explaining I had done months previously. Shortly after telling him that, he admitted that he didn't know how to help me and recommended that I find someone with more knowledge of cptsd.

Then I found someone highly knowledgeable about cptsd but he wasn't able to help me. I do not know why. I guess it is just like that sometimes. A therapist might work for some but not everyone.

Now, I have a therapist who is very encouraging. We have a lot of similarities in our beliefs and backgrounds and that seems to help. She tells me it is okay to make mistakes, to be messy, and that life isn't black or white but very grey. Those words helped me a great deal having been raised as if a mistake was the end of the world.

I know I am rambling but hopefully this will help you formulate more coherent thoughts than mine about what clinicians need to know. What a wonderful opportunity, Kizzie!

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marta1234

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #8 on: August 29, 2020, 04:49:40 PM »
:yeahthat:
I completely agree with what whobuddy said. Thank you again Kizzie for doing this! :)

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woodsgnome

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #9 on: August 29, 2020, 04:59:00 PM »
 :yeahthat:

I've also gone (endured) lots of therapists, until finding someone very similar to Whoobuddy's description. This makes a huge difference, but it seems from what I can gather there's still this problem. Boiled down, it seems as easy as therapists forgetting they're in the profession of helping people, not sorting them into categories with instant prescribed solutions. Of course, some of this seems tied to insurance providers as well.

At any rate, just wanted to add a thought to the well-put observances of Whobuddy. Therapy can play such a huge role in already dire life situations. Cookie-cutter solutions don't always apply.

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Blueberry

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #10 on: August 29, 2020, 06:22:34 PM »
 :yeahthat: All the way back to Whobuddy.

In fact I was told by a T in inpatient treatment that if Ts provided personalised, specific therapy for everybody (the way I do with one-on-one teaching for my students), the Ts would all get burnout. So I was expecting 'too much' apparently and I was so exhausted before going in because I had been working too hard and providing my students with too much. That's actually NOT why I was exhausted either.

Fortunately after that inpatient bout, I found my present T who doesn't attempt to heal me with some sort of set steps. He really looks at my case and he doesn't insist on asking 'dumb' questions since they trigger me big time. There are those Ts out there but you have to look for them. This is really unfortunate for people whose medical systems and/or insurance companies assign them to a specific T. Not my case but seems to be in some countries.


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Whobuddy

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #11 on: August 29, 2020, 07:35:16 PM »
Thank you Marta, Woodsgnome, and Blueberry for validating my ramblings.

To try and explain further: clinicians need to understand that what happened to us resulted in our own thoughts turning against us even when we are not in external danger. We are not safe even in our own minds. We cannot trust ourselves because 'ourselves' have been trained by others to disregard our own well-being.

Clinicians could help us greatly be seeing us, hearing us, and most of all teaching us how to honor ourselves. I suppose the first hurdle to this is helping us grasp that we are indeed worthy of honor.

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owl25

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #12 on: August 30, 2020, 01:47:13 AM »
This is going to take some thought to answer. I've found myself wondering what to say in response to this question, and I'm finding myself a bit lost on it. I have some thoughts that may come out a bit haphazardly as a result. I don't have a clear answer.

One thing I agree with is what Whobuddy says:
"What I mean is that some quickly give a cut and dry diagnosis and prescription for treatment such as EMDR, meds, or similar and others go to the other extreme of "client-led" therapy and they do little other than listen. They need to find the middle ground. We are all so very different in our unfortunate experiences, how we responded, how we coped, and where we are presently. "

In my experience, most therapists do not understand trauma. They have no idea how it affects a person and what it means in terms of attachment in the case of childhood trauma. I have felt many times misunderstood. In some cases I felt judged for the anxiety I experience, and like I was a crazy person. What was I getting so worked up about, after all?

I feel like all the mental health professionals that I have seen over the years have all been absolutely clueless about what a person with complex trauma experiences. Some made me feel judged, some were arrogant and thought they knew everything about me after only 10 minutes of talking to me, some were very rude and asked invasive questions. Those were the bad ones, and clearly had their own issues. I spent most of my time educating my long-term therapist. I was doing all the research and reading, and spent a lot of time catching her up on stuff. I was too afraid, for many years, to admit to myself that maybe she didn't know what she was doing when it came to the trauma. The idea that she didn't know how to help me until recently was just too frightening and overwhelming. So I ended up staying with her far longer than I should have. She was very well meaning, and I think she believed she could help by just listening and offering feedback. But meaning well isn't enough to help someone.

Unless you have experienced complex trauma yourself, it feels like nobody can possibly understand or relate. Mental health professionals don't seem to get any training in trauma. I was looking at some university curriculums to see what people becoming psychologists would be learning and not a single course on trauma. I think this is a huge problem. I think trauma is an epidemic in our society and it's just not recognized at all. It baffles me that it is ignored in the basic education.

I think every single mental health professional needs to be schooled in complex trauma. They need to understand the impact on a person. They need to understand the impact of growing up in a home with emotional neglect. Everyone can intuitively understand physical or sexual abuse would be damaging, but emotional neglect? It is an invisible beast that people do not understand whatsoever. It is something that can happen in homes with even well-meaning parents and the damage is huge. They need to learn enough to at the very least be able to diagnose it in a person, and if they feel like this is not the population they want to work with, they need to refer the person on to someone who does and who has gotten an extensive education in complex trauma.

I think trauma is something that people instinctively avoid and run from. I think mental health professionals are not immune to this. I think way more of us have been affected than people would care to admit or want to look at.

In summary
All mental health professionals need to be trained and educated on the basics of complex trauma
They need to know enough to refer a person to someone else if they don't pursue advanced complex trauma training
They need to have empathy and be compassionate, rather than judge the clients they see and make snap judgments about them/ask invasive and insensitive questions
Those who do wish to work with trauma must understand it is a very delicate issue. Attachment trauma is excruciatingly painful and getting things wrong in this area is very bad. Not knowing enough about it or how to work with it/treat it can cause some very serious damage and distress.


Why do we need a seat at the table?
 - We need to be seen and heard. We are still too invisible by the very people who are supposed to help us. Far too few clinicians understand what it means to have a complex trauma history. It is very hard to understand what a person with complex trauma deals with and experiences on a day to day basis, and without having our input, it would be impossible to know what it means and to develop appropriate treatments.

What treatment, services and support do we need and how might we work together to get these in place?
 - It would be helpful if there were a directory of some kind for therapists treating complex trauma. I find that the really good ones seem to be unlisted and it takes a lot of work to find a person. (This is actually a complaint I have regardless of what issue you are trying to get support with - not just trauma)
 - Treatment right now seems to be focused on the individual. If a person has managed to have a partner and/or children, the family as a whole needs to have counseling available. Don't treat the person in isolation.
- Talk therapy can only go so far. CBT can only go so far. No single approach is going to be enough. Trauma treatment requires multiple components. I haven't tried much of this on my own just yet but from my own research, it seems trauma is stored in the body, so the body needs to be involved in the treatment. I'm not sure what that looks like. I know that my body never truly relaxes, and I'm always tense. I don't know how to learn to relax and I startle easily. Any good trauma treatment needs to involve bringing the body out of the hyper-alert state it's in (assuming the person is now safe and not being abused by anyone).
- Have a plan in place to treat the trauma. Open-ended therapy where the client is just listened to and validated isn't enough to heal them.
- Grounding techniques, such as counting items you see, aren't enough. These really are just a means to manage symptoms, but they do not solve the root of the problem. I have refused to use these grounding approaches because the message to me is "the real problem isn't important, I just want you to calm down so things are easier for me", or "I don't know how to fix the real problem so just do this instead"
- Breathing as a means of handling anxiety often does not work because this is threatening. It brings us back into our bodies and opens up feelings we are desperately trying to keep at bay. Jumping into breathing right away might not be the best way. I'm not sure yet what one does instead, I am sure a good trauma therapist would know how to work with this to get someone to a place to start to be able to breathe gradually.
- We need help coming out of the social isolation that comes with complex trauma. We need help getting connected to other people. We need help with developmental milestones we may have missed, such as how to make friends. I think this is a really important and critical part of treatment.
- availability of crisis support between regular appointments is a must. I have not found the regular mental health crisis hotlines helpful the few times that I called, and they ended up making me feel worse. An emergency counselling session was more what I needed when in crisis, rather than being given platitudes, grounding techniques that didn't work for me, and feeling like I was taking up too much time.
- Treatment needs to be accessible, We need a lot more therapists trained in complex trauma. There are too few available for treating this condition.
- Cost of treatment is a barrier to treatment. Complex trauma requires long-term treatment.

What can they need to learn about us that therapy sessions or research studies haven't revealed?
- how excruciating this condition is
- how it takes over your life and how much of it is driven by pure fear
- how pervasive the feeling of not being safe is
- how socially isolating it is
- if an approach is not working for a client, then look at it as not the client being the problem, but rather, the approach doesn't fit, so be willing to look at something different.
- that even though we may possibly look like functioning adults, on the inside we are terrified. We need to be treated with care and compassion.

All of this is coloured by my personal situation and experience, I can only speak from that place. I may have more thoughts as I think about this more.
« Last Edit: August 30, 2020, 02:50:51 AM by owl25 »

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saylor

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #13 on: August 31, 2020, 06:43:58 PM »
I agree with much of whatís already been said, especially regarding the need for clinicians to be compassionate and avoid invalidating clientsí experiencesóboth of the original abuse(s) and also of the struggles with present-day symptoms. Iíve mentioned this before, but it merits repeating here: I had a terrible therapy experience with someone who didnít seem to take my challenges/concerns seriously. This was actually somewhat retraumatizing and has, at least for the time being, turned me off of therapy. Self-described trauma therapists, of all ppl, should be equipped to understand the seriousness of what us folks with CPTSD/insecure attachment are dealing with, and when they behave in a dismissive or invalidating manner, it can create a very poor foundation for healing.

Some other thoughts:
-It would be nice if there were more research geared directly towards CPTSD. At least in the US, most (maybe all?) of the studies that Iíve seen coming up seem to focus specifically on combat vets, or at least ďshock-traumaĒ survivors. I realize that this is probably because most of the available research dollars in my country come from the VA, and it is what it is, but itís still disappointing that, once again, we seem to be falling through the cracks. It would be nice to know that this treatment or that treatment thatís coming onto the scene has been shown to be effective not just for PTSD, but for CPTSD (which is quite a different animal, in various ways). It would also be nice to be eligible to participate in research studies despite not being a combat vet.
-For those of us who have not found success with traditional therapeutic approaches, it would be nice to have access to therapy with psychedelics (which can supposedly be highly effective for things like PTSD, depression, OCD, etc.) Some are accessible (albeit not widely), but not currently covered by most insurance plans and are very pricey out-of-pocket. Others are not accessible (legally) at all, at least in the US. This really needs to change.

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Kizzie

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Re: What I'd Like Kizzie to Speak About at the Trauma Summit is ...
« Reply #14 on: September 20, 2020, 01:06:31 PM »
Tks to everyone for your responses!  :thumbup:   

Keep the posts coming as the summit isn't until March so I have until Feb to include as much of your feedback as possible.  :yes: