I'm new here and one thing I'm desperate (just scared everyone away!) to find are real live people suffering from Complex PTSD or similar. I am struggling and have no support. In therapy for 5 years but have also had to move a lot because I lost everything when this happened. I would just like to talk to another human being who gets it. I've become somewhat agoraphobic with all this and I can't stand not having people. Are there any group listings in specific areas?
What an excellent and difficult question. Sorry you've not been responded to yet (that can feel so vulnerable). I hope you get lots more responses from our large community.
I work at ACEs Connection but I'm going to share as a survivor for a minute. I started sharing publicly, five years ago, from a survivor perspective because I too was looking for others who get it and that was and still is extremely difficult to find despite the fact that there are so many of us. For me, I wasn't interested as much in the treatment methods or coping, as there's often lots of advice on both but it's often not written by people who have experienced complex PTSD, so despite being well-meaning it often misses the mark.
Many of us are looking for how people balance symptoms and daily life, unlearning about childhood while being a parent, and holding on to a sense of self or self-esteem when also battling symptoms that are labeled and judged, often critically, by others. Those aren't just things about how we cope or what we've been through but are about the medical model, the way survivors are often treated and mistreated, or as Jane Stevens says, "blamed, shamed, and re-traumatized" for being in pain.
Lots of us are wanting to share from lived and learned expertise and help change the ways treatments are designed and delivered as well to make them more portable, affordable, appropriate, appealing, and effective. After all, LONG BEFORE the trauma-informed movement understood how and why talk therapy and the most frequently kind of services available weren't all that helpful to many trauma survivors, survivors were saying so loudly and often - and not being heard (or called non-compliant, etc.).
There was so little from a survivor perspective in research or at all, and so much written about survivors by others who either weren't survivors or were not feeling safe or able (and often for professional reasons) to say, "Me Too," about being a survivor. The other folks in a similar situation, or ideally, a bit further down the road in their own journey was who I was curious about meeting.
That's a whole lot of paragraphs to say - there are a lot of people needing and creating the kind of community that might be most healing.
That's a whole lot of paragraphs to try to say you are not alone in what you've been through, want and now need.
There are lots who share the same need for survivor community. Some folks sharing from that perspective on ACEs Connection are @Teri Wellbrock, @Anna Runkle, @Louise Godbold, @Michael Skinner, @Leah Harris, @Dawn Daum, @Joyelle Brandt, @Elisabeth Corey, @Donna Jenson, @Elizabeth Perry, @Mary Giuliani and others. They have orgs, workshops, podcasts, writing classes, websites and some online stuff that's survivor centered and supportive. I'd check out their profiles, things written on ACEs Connection and elsewhere to find out more. This is not an exhaustive list just and I'm on cup one of coffee and missing many names. Please add yourself or reach out to Mara or include yourself or others.
You can also find that the Practicing Resilience for Self-Care & Healing page is a place to learn and connect as well.
@Donna Jenson does online workshops for survivors and I know that Laura Davis, one of the co-authors of the Courage to Heal offers free weekly writing prompts on her website (www.lauradavis.net) which is not only for survivors but is a survivor-friendly space and free.
I hope this is helpful and thank you for sharing and being honest about where you are at. I'm sorry you have lost so much. I'm sorry you are isolated. I totally get the need to find others who "get it" and honor your being clear and direct about what you are looking for. That's not easy. My feeling is we get it together by being together with people who get it.
Thank you Cissy... I will check this out.
Cissy, Loved all you said in your comment to Mara and appreciate you sending her my name as well as all the others. So on target saying, "...we get it together by being together with people who get it" How true!
Mara - be delighted to connect with you. Your message, rather than scaring me away, draws me in. Hope to start a conversation some time.
Thank you Donna.
I missed this message, Mara! Thank you, Cissy, for responding and offering my name and Echo's work.
Mara, I'm delighted to meet you on this forum. Cissy's answer is so eloquent and spot-on I find I have very little to add. (And that from someone who likes to write!)
I tweet every now and then @Godbold and find like-minded people that way. (You also have everyone who wants to add their 2c and may not get it, but I've learned to focus on those who do). Today I'm in conversation with East African peace-keepers! Trauma is broad, pain is deep, but human connection is greater and can stretch across continents!
Mara, I get some of what you are feeling. The pain, the isolation not knowing where one is and how to get out of this dark hole. Each day is a struggle. But must say that I have found sharing on this forum very healing. Even though I live in India, our common history of childhood abuse dissolves the barriers of distance, race and other differences. It has been a year since I joined this group and have found it really healing. Alternately, you could also join some of the closed Facebook groups for PTSD.
Cissy. what a beautiful soul you are, always reaching out. Thanks for all the support.
Cissy, thank you for including me in your insightful response. It made my heart happy to see so many beautiful souls included who have already joined me on The Healing Place Podcast to shine their light of hope. You included!
Mara, I, too, experienced agoraphobia in response to my trauma history. The panic attacks were overwhelming. After 98 sessions of EMDR therapy over 4 years, reading and researching all I could on brain plasticity, filling my toolbox with coping skills learned along my healing journey, I can now say I am panic-attack free and living a life filled with tranquility and joy. I wish you continued healing and peace as you find connection with others who honor your story.
I have interviewed so many amazing people on the podcast. Listen in for free on iTunes, Spotify, Blubrry and YouTube. Perhaps one (or more) will speak to your needs and help guide you along your healing journey.
Hi Mara! I fully recommend looking into 12-step groups, specifically ACA (Adult Children of Alcoholics and Dysfunctional Families) and CODA (Codependents Anonymous). The combination of the two (really delving into both programs, including working the Steps) plus therapy has been a life-saving, game changer for me. I wish you lit’s of hope and recovery!
Hi Mara - thank you for the post and thank you to all the responders. Such thoughtful responses.
I too just joined after having an epiphany this weekend. Thought I was BPD and stumbled on to the ACE's too high site and realized that I was borderline borderline (lol) and that the ace model/study spoke directly to what is ailing me.
So far from what I've read here the community appears to be part of the salve that helps to sooth the wounds of daily dis-stress from my ACE's.
In person groups and or meetings would seem to be extremely helpful on this part of the healing journey??...
Are there any in the Massachusetts/New England area that others are aware of?
I'd be willing to look into starting one if there aren't any...I am and have been a friend of Bill W for many years - 15 of them sober from alcohol.
Hi Glenn, I wonder if you might want to reach out to the Massachusetts Essentials for Childhood community on ACEs Connection. They are a statewide group and their community manager is Deb Mutschler. Additionally @Cissy White (ACEs Connection Staff) is the regional community facilitator in the MA area.
Hope this is useful!
Thank you Karen. I'll reach out to Deb and Cissy for more info. Thanks for the community link - I've joined🙂.