noun 1.) a state of confusion
verb 1.) disrupt the systematic functioning or neat arrangement of
What’s in a name?
These days, I hear in my own life a lot about a particular one: Post Traumatic Stress Disorder (PTSD). While there are all types of trauma that can potentially trigger symptoms of PTSD, those of us who are cancer survivors are also often PTSD survivors. Unfortunately for us, chemotherapy doesn’t work on PTSD.
Recently listening to one of my favorite podcasts, the hosts discussed the initiative in many countries to change the name of PTSD to Post Traumatic Stress Injury (PTSI) or simply Post Traumatic Stress (PTS). These adjustments have been given as a response to the very definition of disorder and on top of that, the social understanding and negative connotation to the word. Experts involved in this movement note that even the use of the word disorder deters people from seeking treatment, making progress towards relief, and seeking community and discussing their hardship with the wider world. I’m under no naiveté that this simple change would fix everything that may be wrong with the mental health community and our society when it comes to this. But still, I think this is such an amazing topic because it provides me an opportunity to share my story, what I think this name change would do, and hopefully illuminate the way for someone else.
I disagree with the word disorder as part of PTSD on principle. And I know that there may be those who disagree, and every person on this path is incredibly unique. But to me, disorder implies that my fight or flight response is not working correctly.
And to me, despite flashbacks, nightmares, intense anxiety, panic attacks, you might be surprised to know that I actually think my nervous system is working just fine. Through evolution, we developed the fight or flight response to avoid danger. And I feel (as uncomfortable and life consuming as it may be), that post-cancer and even during cancer, my nervous system was probably doing exactly what it needed to avoid danger, and to process so very many traumatic experiences that came at me in just a few short months.
I started having vivid, graphic nightmares before chemotherapy. They’ve continued, and thankfully gotten much less frequent. Stuff like my whole family dying in a plane crash. Someone kidnapping me and shaving my head forcefully (who wants to guess where that one came from?). Last night I had a dream I got shot in the chest, right where my biopsy scar is. In the nightmare, my mom dragged me to a house nearby and then we had to escape from there too. Now don’t get me wrong, this has been terrible. I’ve been told some of this is my nervous system coping, trying to file away so many pieces of information at one time. And it’s a good barometer for me, because I know if I have one it means I need to dial my regular non-cancer life stress down a notch. Because clearly I’m working through something.
Social events that used to be the highlight of my year, are now often laced with intense anxiety about what personal questions I might be asked, what I might have to relive, and the constant comments about my appearance. Everyone means well, but try recounting your diagnosis story 1000 times in 10 months. I often get a response to this: well just tell people you don’t want to talk about it. And sometimes I do. Sometimes I think I’m fine and I get into it and I realize halfway I’m not fine at all. Scott always knows when this has happened, because I often come home in tears and just feel “off” for a day or two. Like all my energy has been drained by reliving little bits and pieces of the trauma and I have to rest and build back up again.
I go in to these specifics to say that, I don’t think there is so much “disorder” in my Post Traumatic Stress, which is my preferred name. When I step back, as a scientist myself, and I think about human behavior, I think: I’m avoiding danger. My fight or flight (or freeze!) response was heightened by what happened to me. In the very definition of disorder is “a state of confusion”. I’m not confused..I almost died! And for my nervous system, there’s no way around that.
A name change doesn’t mean we don’t need help (I have lots: a counselor, meditation, good friends, family and a support system, EFT/tapping,etc). But I think in many ways, dropping the “disorder” and all that comes with it means we can come out of the dark. There’s nothing wrong with me, or my post traumatic stress. And there’s nothing wrong with you, either. The more we bring light to that truth, we will all benefit from a community where people can truly be themselves, no matter where they are in recovery and no matter what they’re recovering from.