Healing Together - ACEs and Dissociation

Hi ACEs Connection -- This is the first time I have posted a blog here, and I'm not sure of the process, but I thought you might like to hear about this conference....so here goes.... 

By definition, a person with Dissociative Identity Disorder (DID) – or any of the Dissociative Disorders – is likely to have a high ACEs score, but I seldom see discussion of ACEs science in the DID literature. On the other hand, dissociation is such a brilliant and creative coping mechanism that it often provides the key to survival and resilience for children who grow up with impossible loads of toxic stress, but it's not often talked about among the consequences of ACEs. I have been a devotee of the ACEs study since I first met Dr. Felitti in 2006 and began using his findings in my work to prevent and mitigate the impact of child abuse and neglect in California. I also live with a Dissociative Disorder and have now come to a place in my healing journey that I am comfortable sharing the realities of the lived experience.  So, when the opportunity arose recently to connect ACEs science, Resilience and Dissociative Disorders, I took the leap and proposed a workshop titled "Dissociation: The Resilience Queen of ACEs."

 An Infinite Mind (AIM), a small volunteer organization with the mission "to educate and advocate for people with trauma based dissociation, with a primary focus on Dissociative Identity Disorder" is located in Orlando, Florida and sponsors an annual conference called Healing Together. This year was their eighth, and it drew more than 400 people from seven countries, and from all over the U.S. The common thread among attendees to these conferences is DID – which is sometimes still referred to by its old name, Multiple Personality Disorder – and the range of other Dissociative Disorders. Everyone in attendance lives with a Dissociative Disorder, loves and supports someone who does, and/or provides treatment or professional support to them. 

 For any reader who is not familiar with DID, it is defined on the AIM website: DID develops as a childhood coping mechanism. To escape pain and trauma in childhood, the mind splits off feelings, personality traits, characteristics, and memories, into separate compartments which then develop into unique personality states. Each identity can have its own name and personal history, and may take periodic control of the individual's behavior.

I attended Healing Together for the first time this year and enjoyed a welcome sense of comradeship and shared experience with 400 total strangers – like an avid, but isolated, gardener who suddenly finds herself at a Horticulture Convention. The bits of conversation I overheard as I gathered and munched crudité at the opening reception sounded familiar, safe, and full of humor. At registration, each guest learned of the "quiet room" where a portable Labyrinth, bean bag chairs, and dim lights created a safe space for restorative time as needed. The vendors in the small exhibition hall carried offerings that resonated deeply: greeting cards about how hard it is to explain what's going on inside; pins that celebrate "Plural Pride;" a sticker for my nametag that proclaims "I Am We" in addition to the one that says "Presenter."  In ways subtle and obvious, the organizers succeeded in creating a space where the fear of discovery and stigma were replaced by understanding, support and humor. For those of us who live with mental health diagnoses, that is quite a feat.

 My 90 minute workshop marked the first time I decided to share my own experience with the gift of dissociation as part of my advocacy. I thanked the audience for being both knowledgeable and safe for my coming out party as I proceeded to use my personal history to illustrate the linkages between the science and the disorder.  Thanks to the ACEs Connection Network, I had access to excellent material and focused on how we can all use our ACEs score and the resiliency research as tools in our healing process. And, thanks to more than a decade of therapy, healing, and my newly completed memoir, I now have a cohesive narrative of my life that makes sense and can be shared. I was officially diagnosed with my Dissociative Disorder in 2007, but, of course, have benefitted from it since childhood.

About half of my audience knew something of the ACEs study and I used the KPJR Films ACEs Primer video to give everyone an overview before digging in to more detail. I had even found a bar chart that correlates 'Impaired Memory of Childhood' (a primary DID symptom) with ACEs scores.  Lots of heads nodded as the obvious connections were made. The discussion about resilience that followed was particularly rich, in that many participants could identify some external factors that had been important, but understood that their own internal strategy of dissociating had been especially powerful in helping them to survive and thrive on the outside. 

In preparation for this workshop, I had worked with my internal community of personalities to draw pictures of how dissociation had worked in our brain to keep the outside girl unaware of what was going on.  These functional drawings helped clarify visually how compartments in a traumatized child's brain can be shut off from each other.  The therapists and researchers in the group were particularly interested in these as possible training tools.  Other participants told me that this new way of looking at it helped them see how their brains functioned, too.

The conference confirmed my suspicion that there are lots more of us than most people think.  By "us" I mean high-functioning people like many of the attendees – lawyers, therapists, teachers, researchers, social workers – who live with the gift of dissociative identities.  Prevalence statistics estimate that as much as 3% of the population has a dissociative diagnosis, and, as with many such complex diagnoses, that is likely under-counted.   

I also learned how difficult it can be for people who present with a more typical trauma-related issue like addiction or an eating disorder to get appropriate treatment for – or even appropriate diagnosis of -- their DID. I heard several stories of multiple hospitalizations for the more visible symptom during which the underlying DID was missed completely – even in places that consider themselves to provide trauma-informed care. 

Most of all, I am excited that I found my new advocacy voice.  A blend of personal story and ACEs science brought this audience to new understandings.  The evaluations of the session were great, and leave me energized and ready to meet the opportunities that lie ahead to deepen connections between ACEs and adult mental health, increase understanding of both, and demystify the much-maligned superpower that is dissociation.

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Beth Huber posted:

Thank you for addressing DID.  I am amazed at the number of people who talk about childhood trauma and the need for healing, but have never heard of DID (or at least that people with DID can be very high functioning in society).  As a teacher in a high poverty school, I believe my traumatic experiences help me to better understand children who face trauma, and my DID allows me to continue functioning as a professional.

Thanks Beth -- I totally agree.  Perhaps the least well-understood aspect of DID is that it can be used as a superpower to maintain a highly functional adulthood.  There is discussion in the DSM about "Healthy Multiple" as a category for those of us for whom dissociation is no longer a Disorder, but now contributes to, rather than disrupts, our lives.  Your students are fortunate to have someone with your empathy and understanding.  You have taken a difficult beginning and built a compassionate means of using all that you learned for their benefit.  

I am eager to do more workshops that promote better understanding of dissociation as a protective and adaptive response to trauma in childhood, and the multi-faceted healing modalities that can lead to post-traumatic growth in adulthood.

Thank you for addressing DID.  I am amazed at the number of people who talk about childhood trauma and the need for healing, but have never heard of DID (or at least that people with DID can be very high functioning in society).  As a teacher in a high poverty school, I believe my traumatic experiences help me to better understand children who face trauma, and my DID allows me to continue functioning as a professional.

Carey S. Sipp posted:

Wonderful, Bonnie! There are active ACEs communities  in several places in FL - Peace4Tarpon; Peace4Gainesville; Peace4TheBigBend. It would be great to see yours, these, and other communities and leaders — there are many in faith communities, colleges, and universities — come together for a statewide ACEs Coalition, Connection, Organization, as you are all doing great work and can benefit from the synergy.  You could also start one in your area; I can help you with it easily  

Such good work is being done in FL. Very exciting. We need a community manager to help create an ACEs Connection website for FL. Working on it! If you know of someone who’d like to take on that role of organizing, connecting, managing the site, helping to to load and share information, please contact me!  I need to circle back around to contacts in FL and see if a professor or two, or a community organizer, would help. And again, you could also start one for your community, as communities range in size and scope from neighborhood to statewide. Geographic communities with cross-sector involvement from education, healthcare, counseling, law enforcement, policy making, recreation, government, advocacy and more getting traction from diverse communities working together? That works so well. Thank you for sharing your post. It will hit home with many people, I believe! 

Carey Sipp

ACEs SE Community Facilitator

csipp@acesconnection.com

Wow Carey, it is exciting to hear about all the work going on in the state I called home during the 1970s.  I live in Southern California now.  I will pass on all the information you have offered, to the organizers of An Infinite Mind in Orlando. Thanks for everything you are doing!

Evie Harman posted:

I had a "light bulb" experience reading your post.  My ACEs score is high, but I was blessed to have that one caring and involved person in my childhood.  I came to an understanding of ACEs and Resilience through my work as a Youth Librarian working with our local school district.  I gained understanding of the students I was working with, but more importantly, I gained understanding of myself.  Until reading your post, I didn't realize that Impaired Memory correlated to a high ACE score.  I always thought my lack of memory of my childhood was one of the places I was "broken".  I can now see that it was one of the things that helped me survive.  Looking at bar graphs was so amazing!  So glad for the work you are doing and your willingness to share about it in this blog post.  Looking forward to learning more!

Thanks Evie.  Isn't it wonderful that there are so many paths to resilience and growth for those of us with high scores!  And there is always something new to learn. I have such respect for the adaptation my system made to allow me to survive and thrive -- I call dissociation my superpower -- not a disorder!

Louise Godbold posted:

Really interesting and brave piece, Bonnie. I'm glad you've found community and I am grateful to you for bringing awareness. We have to create safe spaces for anyone experiencing any kind of trauma adaptation and I for one have not been sufficiently educated about DID. Eager to learn more. 

Thanks Louise.  And thanks for noting that we have not yet done a good job of building authentic awareness of DID, even given its prevalence.  Unfortunately, movies like Split and Sybil form the bulk of most people's understanding of this spectrum of trauma responses.  At the conference there was general agreement that we must do better at global education.  I came away energized to help do just that, while at the same time, using it as a perfect opportunity for educating about ACEs science, too. I wish I had been in town to attend the Echo Conference -- it looked fabulous, as always.

 

 

I had a "light bulb" experience reading your post.  My ACEs score is high, but I was blessed to have that one caring and involved person in my childhood.  I came to an understanding of ACEs and Resilience through my work as a Youth Librarian working with our local school district.  I gained understanding of the students I was working with, but more importantly, I gained understanding of myself.  Until reading your post, I didn't realize that Impaired Memory correlated to a high ACE score.  I always thought my lack of memory of my childhood was one of the places I was "broken".  I can now see that it was one of the things that helped me survive.  Looking at bar graphs was so amazing!  So glad for the work you are doing and your willingness to share about it in this blog post.  Looking forward to learning more!

Really interesting and brave piece, Bonnie. I'm glad you've found community and I am grateful to you for bringing awareness. We have to create safe spaces for anyone experiencing any kind of trauma adaptation and I for one have not been sufficiently educated about DID. Eager to learn more. 

Wonderful, Bonnie! There are active ACEs communities  in several places in FL - Peace4Tarpon; Peace4Gainesville; Peace4TheBigBend. It would be great to see yours, these, and other communities and leaders — there are many in faith communities, colleges, and universities — come together for a statewide ACEs Coalition, Connection, Organization, as you are all doing great work and can benefit from the synergy.  You could also start one in your area; I can help you with it easily  

Such good work is being done in FL. Very exciting. We need a community manager to help create an ACEs Connection website for FL. Working on it! If you know of someone who’d like to take on that role of organizing, connecting, managing the site, helping to to load and share information, please contact me!  I need to circle back around to contacts in FL and see if a professor or two, or a community organizer, would help. And again, you could also start one for your community, as communities range in size and scope from neighborhood to statewide. Geographic communities with cross-sector involvement from education, healthcare, counseling, law enforcement, policy making, recreation, government, advocacy and more getting traction from diverse communities working together? That works so well. Thank you for sharing your post. It will hit home with many people, I believe! 

Carey Sipp

ACEs SE Community Facilitator

csipp@acesconnection.com

Good for you for coming out to help educate us both in your presentation and in this excellent post! Your work and advocacy is much needed and appreciated. Thank you so much for sharing some of your story. Keep up the good work!

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