Guest Post: The Complexities of Medical Trauma in Childhood Cancer
Heidi is a childhood cancer survivor of over 35 years. She was diagnosed with Acute Lymphoblastic Leukemia at 5 years old and is now a Licensed Clinical Mental Health Counseling Supervisor and Registered Play Therapy Supervisor, specializing in medical trauma from childhood chronic illness.
You can find this blog post and other posts about childhood medical trauma from childhood chronic illness on Heidi’s Substack (heidiwatkinsrpt.substack.com) and on Instagram at @the.teal.daffodil .
What is Medical Trauma?
When I was diagnosed with Acute Lymphoblastic Leukemia (ALL) at five years old, the idea that my mental health needs were important was non-existent, and the acknowledgement that children with cancer could have trauma from their experiences would still be years away.
Fast forward to the early 2000s: I remember doing my final college project on trauma and childhood cancer, and at the time, I had three research articles about childhood cancer and trauma. As a college graduate, I knew that children with cancer could have trauma from their cancer experiences. I knew from my own experience and from stories my peers shared, but the research confirming my experience was still needed.
Heidi during treatment for childhood leukemia
Since beginning my career as a play therapist over ten years ago, the field of childhood trauma has grown significantly. Play therapy is designed to support a child’s mental health by using the ‘language’ kids know best: play.
We now know that the mental health needs of children going through cancer treatment are vital to their overall health.
But medical trauma from childhood cancer is still misunderstood.
This was made evident to me when I recently listened to a podcast by a childhood trauma expert, someone who’s taught me so much about childhood trauma and the nervous system. She and another play therapist discussed medical trauma in this particular episode. They discussed what medical trauma is, the role of a parent of a child with medical needs, and some ideas to help with doctor’s visits. However, they left out a whole population of children with medical trauma: those of us growing up with chronic illnesses.
As a childhood cancer survivor of over 35 years, I felt left out of the conversation, and I noticed that the chronic part of childhood cancer (i.e. that childhood cancer treatment can last years) is often left out of medical trauma conversations because childhood cancer adds complexity to our understanding of medical trauma.
Simply defined, medical trauma is the trauma that stems from a medical intervention that induces fear and stress.
Trauma itself happens when an experience overwhelms the nervous system — the stress is too much, too soon. Along with overwhelming the nervous system, there is a sense of being alone in the experience. This feeling can be either physically alone or emotionally alone (i.e. even though others are present, there isn’t an emotional connection).
One challenge when it comes to trauma is that it is based on perception. What is traumatic for one person may not be traumatic for another. Therefore, any medical experience can be traumatic. A child who has a fall and has to go to the hospital for a cast can have trauma from the experience. But there is something different about growing up with childhood cancer, something more complex.
Heidi during treatment for childhood leukemia
How Childhood Cancer Adds Complexity
When I (or any trauma therapist) assess the impact of an event or experience, I’m looking to understand if the traumatic experience was a one-time event or if it happened multiple times.
For example, a child who is bullied once at school is going to have a different experience than a child who is bullied every day for a year or more. Medical trauma is similar: a child who goes to the hospital for a broken bone is going to have a different experience than a child who has years of hospital and doctor’s visits. Both experiences can be traumatic, but they are different.
This is what I find to be the missing piece to a lot of thought pieces and podcasts about childhood medical trauma: those of us who grow up with childhood cancer have a very different experience than a child who has one stressful doctor’s visit.
For those of us who grow up with childhood cancer, there isn’t just one traumatizing thing: it’s multifaceted. Since trauma is in the eye of the beholder, there is also no one-size-fits-all way to determine what it is about growing up with childhood cancer that is traumatic.
For some of us, it could be the existential challenge of having a cancer in childhood and the reality of a possible death. For others, it may be a break in trust with caregivers and adults, or there may be developmental experiences missed. Or maybe it was an actual event or procedure that was overwhelming and frightening.
For some of us, it’s all of the above and more.
There are numerous ways that childhood cancer leaves an impact that a single event medical experience doesn’t.
For us, the experience grows and takes root in different areas of our lives.
For us, the trauma of having childhood cancer is like a vine you don’t want in your garden: it takes root and those roots run deep and spread out. Even when you try to prevent it or uproot it, there’s another tendril of roots hiding somewhere else.
For me, this is one of the challenges of childhood medical trauma: there’s no way to prevent it or predict what is going to be traumatizing because the core event is the cancer itself. This is what makes trauma from childhood cancer complex. There’s not just one thing that’s traumatizing or a single experience. It’s multiple experiences over the years that leave a lasting impact.
We are forever changed by our cancer; it becomes a part of our story from the moment the first symptom appears.