When PTSD is not PTSD and why I can’t wait to have it.

by Amanda Heller

I know that sounds crazy, who in the world would want PTSD, Post Traumatic Stress Disorder, much less look forward to it? I am not making light of such a struggle. I learned first hand how bad living with PTSD was after significant trauma years ago. I actually thought I had it again when dealing with my daughter’s complex medical problems, but I realize I was wrong. PTSD is serious and debilitating but that is not what I have. That is not what most parents with chronically ill children have.

“Post” implies trauma is in the past; over and done. For me, that’s inaccurate. My stress is ongoing. Almost constant. It’s unrelenting. It isn’t over. It’s definitely not in the past. And it most certainly is not going away in the near future. What I have is Persistent Traumatic Stress Disorder. This is a kind of stress that isn’t so much “triggered” as endured. Getting triggered is unexpectedly re-experiencing something traumatic even though it isn’t actually happening in the moment. This is a hallmark symptom of PTSD, but being triggered implies there is a period of time when not experiencing trauma. In Persistent Traumatic Stress Disorder you don’t get triggered. The traumas never really stop occurring.

New traumas develop as complications arise and treatments compound the needed interventions. I can’t unexpectedly re-experience something that never really stopped in the first place. The “unexpected” gets replaced with “anticipated” when conditioned by persistent trauma. The intensity certainly fluctuates between tolerable and intolerable, but it never really goes away. I live my life in two hour increments of time dictated by a medical care schedule. My existence is marked by constantly moving from one familiar trauma to the next, with unfamiliar traumas in between. It’s not just reliving those traumas emotionally. It is also physical, financial, social, cognitive, and spiritual.

The cause of persistent trauma is easily recognized but there are additional traumas not so easily connected. Especially by those ensnared by it. Poor nutrition, chronic lack of sleep, weight gain, depression, and anxiety are practically unavoidable. Also there are social and financial sacrifices, sometimes even the loss of home and community. This is especially true when relocation becomes necessary rather than voluntary. Perhaps the most painful is the fading of once cherished relationships created by awkward silences and un-traveled distances.

Cumulatively, the secondary traumas can sometimes overshadow the primary trauma. This results in disproportionate responses to “the little things”. Often it is the little things that bring me to my knees. Once, I barely made it back to my daughter’s hospital room before sobs overtook me when the cafeteria unexpectedly closed before I had a chance to get a meal. Most often, the little things are what break me.

It’s these less important things that somehow fracture the vault where I lock my deepest pain. The vault created to have the strength to keep moving forward since feeling the intense emotions from persistent trauma steals too much energy from the tasks of fighting, surviving, and advocating. Therefore, feelings have to wait and waiting to feel becomes automatic. Feelings waited as I stayed calm watching my little girl’s limp unresponsive body be intubated, medicated, and worked on for hours before finally being stable enough to be transported. Feelings waited as she was strapped to a gurney so we could be flown on a life-flight to a hospital several hours away. Sometimes the tears I don’t dare let fall, make it impossible to see how to move forward, so I have to fight just to hold the ground I’m clinging to.

Persistent traumatic stress has also taught me to immerse myself in moments of peace between the waves of turmoil. It enables me to find myself in pure joy I could not have known without the contrast of being lost in the shadows of intense sorrows. It has now become so familiar that I suspect adjusting to its absence will bring a sort of new trauma. When there is room, time, and energy to validate them, all the ignored and repressed feelings can finally be allowed to emerge. That is when I will have traditional PTSD and I can’t wait until I do.

It will mean my daughter is finally well enough that a shift has been made from Persistent Traumatic Stress Disorder, to Post Traumatic Stress Disorder. Moving from one to the other will be a bit like healing from a 3rd to a 2nd degree burn. The damage and suffering are still significant but it’s an improvement. And if having PTSD means she is finally healthy, then I can’t wait to have it.


Amanda is a divorced mother to one child with multiple complex diagnoses and we live in Colorado. I love to write and really enjoy doing things for other people. Especially if it involves helping someone else along this journey we all walk. My specialty is creating solutions for making all things medical more manageable in daily life. I have a Bachelors degree in psychology and currently work as my daughter’s home health aide.