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Acceptance and Living with PTSD - Chat Transcript

The Pandora's Aquarium chat room welcomed Marla Handy, as a guest speaker on March 31, 2012. Marla  is author of the book No Comfort Zone: Notes on Living with Post Traumatic Stress Disorder. If you would like to read more about the book plus some reviews, please see this link. Marla was also featured in a DVD with psychiatrist and trauma specialist Dr. Frank Ochberg, Making Peace with Chronic PTSD - Marla's Story

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Louise: Hi Marla and everyone! I just want to extend a big welcome to you and our guest speaker. Thank you for coming! Marla is a Phd, a survivor and author of the terrific and honest book No Comfort Zone: Notes on Living with Post Traumatic Stress Disorder. Marla has also featured in a DVD with psychiatrist and trauma specialist Dr. Frank Ochberg, Making Peace with Chronic PTSD - Marla's Story.  We are very glad to have Marla, and we are sure that our members living with the traumatic effects of abuse will benefit too.

This chat is expected to run for 60 minutes. We'll be asking pre-submitted questions during the first half of chat. During the second half, Marla will answer your questions, and if time and space allow, we have more prepared questions. Feel free to ask questions throughout the chat, though they will not show up until later.

Louise: Do you feel good to go with some questions, Marla?

Marla Handy: Absolutely.  Thanks!

Louise: Right :) Here goes.

Question: First, Marla, could you tell us about your book, No Comfort Zone?

Marla Handy: Well, I think of it as narrative nonfiction.  It's a description of what it's like to live my life with PTSD, which includes the times when I was so confused about my reactions to the world because I didn't realize I had PTSD. 

I was traumatized starting at such a young age that I don't remember there being a time "before things got bad."  I knew though that I somehow felt different than I thought I should and I was ashamed of that.  I felt I was too needy, too messy, and that I had to hide that.

I wrote about that and what it has been like to become more accepting of myself, messiness and all.  So, in that way, it's also a description of my journey.

Question: What does it mean for you to accept PTSD?

Marla Handy: I guess it means accepting that there won't be a day when I'm "all better now," a time when PTSD will no longer be a part of my life.  It's not like an infection that you get, get treated for, and get over.  I do think of it as a chronic condition.  Like diabetes, it requires daily awareness and management.  Like epilepsy, it requires a certain acceptance of randomness in life.  But I can have a chronic condition and still live a satisfying life, one with meaning.

And, like those other chronic conditions, I don't need to be ashamed of it or apologetic about doing what I need to do to take care of myself.  If I'm around people who don't accept that, then I probably shouldn't be around them.

Having the symptoms of PTSD is enough of a pain, but I had also layered shame and isolation on top of it. Even when I was doing well, I felt that, deep down, I was a mess and that made me feel like a fraud.  Accepting that I have PTSD means rejecting that shame and isolation.

Question: Can you tell us about the positive and hopeful aspects of accepting PTSD rather than chasing a cure which may not be found?

Marla Handy: Well, accepting that I have PTSD was a humbling experience.  It meant accepting that I wasn't who I wanted to and thought I should be. I wanted to be invulnerable which, I guess, was part of my definition of being "all better." But, with that humility, also came more peace than I've ever felt.

Instead of feeling shame and isolation, I started paying attention to what I needed to manage my life and relationships so that I was less stressed and less likely to be triggered.

I don't think accepting PTSD meant giving up hope of ever feeling better.  I think it was giving up hope for a cure that would reliably wipe away all traces of my trauma so that I could finally get on with living with the level of confidence I thought I should have.  For me, accepting PTSD means getting on with living anyway.

That means my symptoms are no longer reminders of how far I have to go or how hopeless (or weird or disgusting) I am. They are parts of me.  If they get in the way of specific things I want in life, then I manage and/or work on them specifically.  If they just make me quirky, I accommodate them.

I am much more forgiving of myself and feel much better as a result.

Question: What qualities should a trauma survivor seek in a therapist?

Marla Handy: A willingness to listen and respect for a client's lived experience are the first things that come to mind, even before technical expertise in trauma treatment.

I believe that, if a survivor is going to learn to live a satisfying life despite the trauma endured, then the power of that trauma has to be respected.  Not feared, not given priority over everything else there is in life, but respected. If a therapist doesn't respect that, then I think it will be hard for the client to learn to do so.  A good therapist is willing to work with a client as a partner and mutual respect is important.

That said, a good therapist should also be a good source of information about PTSD and be able to help a client sort out which of her/his reactions to the world are likely to be PTSD-based and which are ones that even a non-traumatized person might have. 

Question: What are some indicators of "bad therapy" with trauma survivors?

Marla Handy: Well, it may take awhile to establish trust but, if you don't feel safe with your therapist, trust your instincts and go somewhere else. 

Many childhood trauma survivors have a hard time trusting their own perceptions because so much abuse was wrapped in denial.  So, I think it's especially important to note if you feel pressured to accept a therapist's perspective, rather than feeling respect for your own.  You might feel, for example, that a therapist is looking for certain responses from you, as opposed to being open to whatever your response might be. If a therapist dismisses your experiences and/or tells you that you shouldn't feel a certain way, it's not a good sign.  I think a good therapist helps us broaden our perspective, not abandon it.

There are also "single solution" therapists who are convinced that their specialty is the answer to everyone's problems.  The danger is that, if their technique/approach isn't helpful, they may decide that it's somehow the client's fault, rather than a poor fit for the approach.

That's the "If all you have is a hammer, everything looks like a nail" approach.

Question: For those who accept PTSD as part of our lives, how can we best take care of ourselves when it feels bad?

Marla Handy: Well, sometimes PTSD is going to feel bad whether you accept it as part of you life or not. Um, I'm going out on a limb here but I'm guessing that the real question is, "What do I do when I feel bad and I've given up hope for a cure?  What's going to keep me going then?"

Just because I don't believe in a cure doesn't mean that I don't believe things can get better.  But, when you don't have much of a sense of a future and it's awful right now, that perspective can get lost.

So, I try to keep concrete reminders around me that I have had better times in the past and that my past bad times did pass.  I keep reminders that I'm appreciated.  Some of those reminders are letters and notes from friends, former students and readers of my book.  Some are photographs.  Once I did a timeline with various events on it and how I felt at the time.  These are my cognitive reminders that my feelings change and I'm not stuck.

And then there are all the things we can do to try to alter our moods at the moment by changing what's going on with us physically.  I cuddle my cats and play with my bird.  Sometimes I walk, but I do have to push myself to move.  Putting on upbeat dance music is easier for me. 

Question: Marla, in No Comfort Zone, you describe yourself as a "haunted house." I'm sure that's something many of us can relate to. Would you talk about what that means for you?

Marla Handy: Well, I feel that I both live in a haunted house and I am a haunted house.  Both have to do with randomness.  Living in a haunted house has to do with hypervigilance, with never knowing when something scary is going to happen.

Being a haunted house has to do with the reactions I have that take me by surprise when I'm triggered.   I suspect I will never understand all of them because I don't have a conscious, verbal memory of all the events that created triggers.  So, I have some dark, cob-webby corners that may never be cleaned out.

But I can still live a life of meaning.

Question: Marla, we'd like to hear from you about the difficulties you've written about with the terms "victim" and "survivor." Could you share about that?

Marla Handy: They're loaded words. I don't think "survivor" takes the social impact of a trauma caused by another into account. Nobody ever says things like "He's a survivor of a Ponzi Scheme."

A part of me feels like there's a bit of "all's well that ends well" in it. That it's a relief to everyone.

So the trauma can be overlooked.  It makes people uncomfortable. I've been victimized. That matters. But it doesn't mean I'm helpless.

Neither word really fits for me.  I think of myself as "living with PTSD."

Question: Some corners of the abuse recovery movement have promoted the idea that survivors need to have a "catharsis" or "working through" the emotions around what happened to them, and then they'll be okay. You've said that this can be problematic, Marla. How so?

Marla Handy: Well, I think the idea behind that is "find the pain, air it out and you'll be fine and can get on with it."  With trauma, it's possible to find the pain and re-experience it, but not gain anything from it.  In fact, it can be re-traumatizing.

So, pushes to get someone with PTSD to "go back there" can hurt more than help, if the survivor doesn't yet have the capacity to deal with it in a new way. This is why I think it's so important for those with PTSD (and their therapists) to recognize that they're the expert on themselves.

That doesn't mean we don't need to expand our perspectives, etc.  But we should have control over the pacing of our healing. I don't think it can be rushed by someone else.

Louise: Okay, we are at about half-time. Kate, have members submitted any questions?

Kate: Marla Handy Chat: Yes Lou, we do have a few - I'll go ahead with them :)

Question: Is the only way to deal with DID to work through the events that led to it?  Even if i don't remember?

Marla Handy: I don't know.  I'm not an expert on DID and don't have it myself (although I certainly have dissociated.)  It seems that there are different kinds of remembering though. And, I would guess that finding and getting to know parts of yourself (even if it's a single body sensation) is a way of becoming more whole.

Question: First...I want to thank Marla for taking the time to speak with us.  I'm sorry -I'm confused about when we can ask questions, but I know it'll be filtered.  My question is how do you learn to not self-loath through the PTSD (because of the reactions that you know are not normal).

Marla Handy: What a good question!

To be honest, I think I just got fed up with feeling like I had to apologize for myself (even to myself.) And then, I had the audacity to think that maybe there should be room in the world (and my world) for my messiness, too. After all, there's room in the world for some pretty horrible people.  And I know I might be messy, but I'm not deliberately cruel and I know it.  So, I started making room for my quirkiness. 

I guess the short answer may be that I shifted from some level of self-loathing to a certain level of indignation. I got mad at the unfairness of it all.

Question:  I have trouble with relationships. I am afraid that people will not want to stick around and help me deal with my issues (specifically with romantic relationships). Do you have any recommendations/insight?

Marla Handy: When it comes down to it, I'm not sure how others can help us with our issues besides not being afraid of them (and therefore us.)  Ultimately, it's MY stuff.  My very close friends and my husband have been amazingly supportive but I've been told it's because I don't make my problems their problems.

That means recognizing when I'm irritable or getting edgy and telling them so. But that means I have to make room for my own messiness if I expect anyone else to do so.

It's a little different when it comes to feeling emotionally detached, though.  Sometimes I have to be told that I seem far away.  I can then either work at being more present or acknowledge that that's all I can do at the time.

Knowing that these things pass helps everyone.

Question: How do you explain to others about the fact that PTSD is a part of your life - and what do you do when some people just don't get it?

Marla Handy: Those that I want to be closer to, or have need-to-know status of some sort, I just tell that I have PTSD.  (I admit that that is a  lot easier since I can always refer them to a book now.)  And then I tell them why I want them to know.  But I do have to think through in advance what it is I hope to have happen as a result of the disclosure. And then I wait for their response or questions.

If people don't "get it", then I manage the impact of that relationship carefully.  In interpersonal relationships, that may mean lowering my expectations or seeing them less often.  In one instance, I did have to set a boundary and ask the person to stop suggesting their solution/cure.  I often say something like 'I'll talk with my doctor about that." But mostly, there is a freedom in knowing that others don't have to understand or accept me.

I've experienced worse and survived.

Question: How do you deal with the feeling of "throwing the towel in”?

When you asked that, I had the image of playing tug-of-war with a dog by using a towel.  It's pretty much all consuming when you do it.  But it gets old.  To me, throwing in the towel means dropping it, walking off and doing something more interesting.

To me, it means setting my own standards of "success."

And I don't have anything to lose by doing that because I still work at my stuff when it gets in the way.  But there are other things I want to spend my life paying attention to besides trying to achieve some model of mental health success.

Does that make sense?

Louise: We are now out of time. Thank you so much for being here Marla. It's been a great pleasure to have you as a guest chatter. And thanks also to everybody who attended.

Marla Handy: Thank you.

Kate: Thank you Marla :)

Louise: We will be posting the transcript of the chat in the very near future. Have a lovely weekend everybody :)

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