Why "complex PTSD" is misunderstood — and what it means to have it

Author Stephanie Foo talks to Salon about complex PTSD, as recounted in her new book "What My Bones Know"

By Mary Elizabeth Williams

Senior Writer

Published February 25, 2022 4:00PM (EST)

Silhouette Depress Woman Sitting And Hold Smartphone (Getty Images / Krisda Ponchaipulltawee / EyeEm)
Silhouette Depress Woman Sitting And Hold Smartphone (Getty Images / Krisda Ponchaipulltawee / EyeEm)

Stephanie Foo's intellectual curiosity had been one of her greatest assets as a producer for shows like "This American Life" and "Snap Judgment." So when she was diagnosed in 2018 with complex PTSD, she applied that same rigor to exploring the roots of — and treatments for — a condition that was only recently identified.

In "What My Bones Know: A Memoir of Healing from Complex Trauma," Foo offers an unflinching account of her rough childhood, and the ways in which her parents' chronic abuse and neglect haunted her — via depression, anxiety and panic attacks — well into adulthood. She explores the emerging research on C-PTSD, and what makes the condition unique from other mental health challenges. And, with a journalist's clear and inquisitive view, she talks about what has helped. It's an intimate account of a phenomenon we're still just grasping the scope of, and a hopeful tale of life after living through the worst. Salon talked to Foo recently via Zoom about her new book, and reclaiming the good pieces from hard memories. This conversation has been lightly edited and condensed for clarity.

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A lot of people don't even really understand what PTSD is. It's one of those phrases like "a little OCD," that gets tossed around in a casual way. But PTSD itself is complicated, and complex PTSD is even less understood. What is complex PTSD? How does it differ from traditional PTSD?

I believe that people usually use PTSD — post traumatic stress disorder — when they're referring to soldiers. If you go through a traumatic event, your brain encodes that as something that's very dangerous. When you are exposed to triggers for that event, you get overwhelming feelings of fear and hypervigilance. Everybody has triggers. It's only when those reactions to those triggers become really debilitating that it is considered PTSD.

You can get PTSD from a single traumatic event, but you can only get complex PTSD from many, many traumatic events, usually over the course of years. People with complex PTSD often develop that as a result of child abuse, domestic abuse, living in a war zone, being a prisoner of war. It's more of a relational thing than traditional PTSD. Because the number of triggers we have is so large, it becomes less tied to very specific trigger than for example, if you were in the desert as a soldier, being in a desert environment. It's more like having an overall uneasy feeling a lot of the time.

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You begin the book with your C-PTSD diagnosis. It's becoming more common now, but a few years ago, nobody had any idea what this was. 

It was a total shock. I thought I had struggled with anxiety and depression. Maybe PTSD seemed like it could be plausible, though I certainly minimized that because of the "Well, I wasn't in war, so it doesn't count" sort of thing.

Which is a thing that a lot of women specifically deal with.

Yes. It's very sexist. The way that we understand PTSD is tremendously sexist, because more women than men have PTSD. Less than 1% of the population actually served in war, and a small percentage of that have PTSD.

What was really problematic about my diagnosis is that, when I Googled it, all of the resources online seems to be very pathologizing. "Here are the things that are wrong with you. Here are the things that you need to fix." The list was pretty dismal. The symptoms seemed to me to make me out to be a bad person. One of the main symptoms of complex PTSD is shame, and feeling you are unworthy of love. This just validated that, and it took me a big journey and a lot of research, and struggle, and study to recognize that that was not the case.

There are certain unique things that happen to people who have experienced trauma and abuse in childhood. Talk to me about the ACE index, and some of the things that people who may be randomly Googling about C-PTSD need to be aware of about the limitations of it?

The Adverse Childhood Experiences score is very widely talked about now. It's a very quick survey that you can take in five minutes. And that number, according to many, many studies, determines your likelihood of getting cancer, of being suicidal. It determines when you're going to die, the likelihood that you won't get a job, or that you'll go to prison, all of this stuff. Of course that was really upsetting when I first read it, but no scientist would use that as a proper metric.

It is a five-minute quiz, and it does not get into the depth of "How many resources does this person have? Did they have a good support system? How often did this trauma occur? Did it happen once a week? Did it happen three times during their childhood?" And so, that score is actually pretty off. You certainly could have a one on the scale and be quite traumatized, or you can have a six and have a lot of resources and resiliency and be okay.

There's just a lot of nuance in terms of complex PTSD that we're not talking about because we love to reduce it to these comfortable little boxes in terms of, "Here are the things that we need to fix, here are the things that are wrong with you, here's what we have to worry about." Rather than understanding it as a really nuanced thing. It really terrifies people when they're first diagnosed, unfortunately.

In your book you look at your own understanding of nuance, and the past. You experienced physical abuse, you experienced abandonment. You also acknowledge that there are good memories and good experiences in there, and that is a big part of your way forward in life. 

I think definitely one of the things was going back to my hometown, and really recognizing the beauty of San Jose. I had reduced it to suburbia in my mind, and being reintroduced to the diversity, the food, the actual natural beauty of "The Valley of Heart's Delight" made me understand that there were hills and citrus and bougainvillea, gorgeous things that I could reclaim if I so chose from my childhood. It was okay to be nostalgic about certain things from my dark childhood.

The other thing I think was the pandemic. My therapist always used to say, "PTSD is a social construct, in that it is only a mental illness in terms of peace. Hypervigilance isn't hypervigilance in war time, it's just vigilance, it's sensible vigilance." In the pandemic, for the first time, I saw all of my symptoms expressed in everyone, not just me. I was like, "I'm normal for the first time." My PTSD made me hypereffective during the pandemic, in a way that I was able to function very well, because I was so used to functioning with the sense of hypervigilance. I was able to keep my family safe and hold space for people, and be pretty emotionally stable. Recognizing that complex PTSD gave me talents that I could actually appreciate makes it a little bit easier to ride out the really painful aspects of it.

I want to ask about when you began to realize that this was something different from depression and anxiety. What manifestation of C-PTSD makes it unique?

The diagnosis helped the treatment. When you think that you have depression and anxiety, you are constantly managing symptoms with whatever it needs to be — alcohol, antidepressants, meditation, whatever. When you understand the source of that trauma, it's much easier to treat it differently, for example, by self-parenting. You recognize that this is a little version of you freaking out. You're not freaking out for no damn reason because you're crazy, and you're not freaking out because of a chemical imbalance. You're freaking out because you made a mistake, and you were told when you were a child that if you made a tiny minor mistake, you would be beaten for it, and you might have your life in danger for that.

Then you can tell yourself, "I'm not in danger." You can try and calm down that trauma response. You can try to see what is actually happening rather than what your brain thinks is happening. You can self-parent yourself and say, "What would a good mother have done in this situation rather than threatening you with your life? She would say, 'It's okay. You can forgive yourself. You can move on. Everyone makes mistakes.'" It becomes more of just like a deeper healing, healing from the very causes. When you heal more deeply like that, these symptoms actually wind up coming up less, and become much quicker and easier to deal with.

C-PTSD often affects marginalized communities and individuals, who frequently have a harder time getting mental health services. How can we recognize the signs in our friends, neighbors, classmates, and help each other when the system is so badly stacked?

In schools, I think that teachers in Asian communities in particular need to do a far better job of recognizing that their students might actually be struggling from legitimate mental health problems or abuse at home, rather than simply dismissing their feelings as the entitled model minority stress that comes from wanting to get into Harvard. We also really need to expand our schools' curriculum to actually cover the United States' proxy wars in Southeast Asia. Just like teaching about slavery and Jim Crow laws helps the Black community understand themselves and their trauma better, teaching about conflicts like the Vietnam and Korean Wars will help Asian Americans grapple with their history more fully. These are all critical moments in American history, and it's shameful that we are trying to erase them. 

But in a larger sense... in our society, I think we need to fight for better mental health care in all communities. I think Asian Americans are often lost in the conversation of mental health, poverty, and intergenerational trauma, because we are again erased as "fine" or "privileged" because of the model minority myth. So we need to advocate for accessible and affordable mental healthcare by fixing our tremendously broken, racist system. We need more research in terms of developing culturally aware mental healthcare to support POC/immigrants who are less responsive to traditional psychoanalysis. We need mental health education/therapist support in schools. And finally, we need to advocate for the inclusion of C-PTSD in our DSM

We always live with our past selves. There's the pandemic; there are new stressors that we can't even anticipate. What does C-PTSD look like for you today, and what do you think healing means?

Having an overall better way of looking at myself and parenting myself, taking care of myself, is a really important thing. Just understanding that I'm deserving of love and compassion for myself, understanding that I'm not inherently a terrible person. That is a deeper understanding that I really possess, and that I don't often go into these spirals of, "Why do I even deserve to be here?" It reduces the size of things, because things happen all the time that hurt.

Where does the concept of forgiveness fit in all of this for you? That's another thing a lot of people impose their own ideas upon, about where someone who has survived things needs to stand.

Forgiveness can be a great healing tool for some people. I don't think it should be forced on anyone, particularly if another person in the equation is not ready to make amends, or has not done anything to deserve forgiveness. Forcing someone to forgive someone who continues to hurt them, and to continue a relationship with someone who continues to hurt them, is not the all powerful forgiveness solution that we tend to put on things.

A lot of things that you've used are familiar to many of us — EMDR, cognitive behavioral therapy, meditation. What is in your current toolkit?

Grounding exercises. Basics such as eating and drinking water. I'm working a lot right now on better metacommunication, better asking for my needs to be met, better asking what other people's needs are, better curiosity for, "What is the true reality of the situation, and how much of it is the panic level that's happening in my brain?" The only way that we can really ascertain that is by talking to people and asking, because otherwise our brains just make up untrue things.

Those are the things that I'm working hardest on now. Also, just maintaining relationships to feel loved and supported, using those relationships to feel loved and supported, and making them great two-way relationships where we are supporting one another in community. Because complex PTSD is a relational illness, it sort of decimates our idea of where we belong in the community. Having that community around us is really critical element of healing.

Read more of Salon's mental health coverage: 

By Mary Elizabeth Williams

Mary Elizabeth Williams is a senior writer for Salon and author of "A Series of Catastrophes & Miracles."

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