Dear Mara:
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.
Warmly,
Cissy
