Medical Trauma Needs to Be Added to the Adverse Childhood Experiences Questionnaire

When I was in college pursuing my degree in physical therapy, I learned about the adverse childhood experiences (ACEs) questionnaire and I always felt invalidated by it. Today, I know why.

This week, I watched as my 4-year-old nephew underwent a pretty major surgery. I was reminded of my own experience having surgery at that same age. Because I see that he does not have the capacity to fully understand what’s going on or why, I see it to be a very traumatic experience — capital “T” trauma. I realize I had the same experience as a kid and that now explains many of my struggles.

The ACEs questionnaire was created in the 1990s, before many people were talking about the impact medical trauma has on the mental health of kids. In that light, I’m not surprised medical trauma didn’t make the cut, but it needs to be added.

You can find the current ACEs questionnaire here.

While I would technically score a 0 on this scale, there were times that I felt like I was going to be physically hurt because I didn’t understand why I needed physical therapy. I didn’t know why I was getting injections, being put in uncomfortable stretching casts or having surgeries. These procedures were painful and constantly made me feel like my body was broken and that I was not good enough.

Although doctors and physical therapists didn’t touch my body in sexual ways, I often didn’t have a say over whether or not they could touch my body at all. I felt violated and that I had no control. I felt like a lab rat when my orthopedic surgeon would send in his residents to evaluate me only to come in after and have him do it again himself. At times, I’d be fighting back tears while screaming in my head for them to stop.

I didn’t feel very close to my family or supported by them at times. Talking about my cerebral palsy felt like a taboo topic unless it was about an upcoming medical procedure. When I’d try to talk to my mom about it, I’d lock up and I couldn’t talk because I felt like I was making a big deal out of nothing. I now know that it was not “nothing.” My experiences were and are real.

So I ask, how is this not trauma? Why are these experiences not factored into society’s concept of trauma?

The ACEs pyramid is a representation of the different impacts adverse childhood experiences can have. These include social, cognitive, and emotional impairment; adoption of health-risk behaviors; disease, disability and social problems; and early death.

If I look at my medical trauma as trauma that should be included on the ACEs questionnaire, the rest of my life thus far makes a lot more sense. Developing severe depression, engaging in self-harm, and struggling to function as a “typical” 28-year-old would be expected to flow along the ACEs pyramid pretty seamlessly.

This is why medical trauma needs to be added to the ACEs. As long as it is not included, it feels as though my trauma was not “traumatic” enough to be considered trauma. But it is. Years of physical therapy, casts and surgeries is traumatic, especially when you’re too young to fully understand it. Between grades six to 12, I think I had 18 different casts, and I had many more before then when I was younger.

Some may think, “oh, this is just a questionnaire, what does it matter?” But really, this is all about validation. This is about validating the fact that medical trauma is real and has lifelong impacts on the individuals who are experiencing it. In addition, psychology has started to recognize the importance of trauma-informed care. In order to fully encompass what constitutes trauma, psychology needs a good working definition of what trauma actually is. Adding medical trauma to the ACEs questionnaire helps allow professionals easily identify events and themes that could be playing a major role in the symptoms patients are experiencing.

When the ACEs questionnaire doesn’t included medical trauma, I feel like my struggles are completely invalidated. It’s time the professionals embrace the reality that living with medical conditions as a child is traumatic. That needs to start now.