When I present oncaregiver trauma, I play avideodescribing thestress, pain and exhaustion of caring for a sick child.1I highlight a scene of a woman sobbing in the shower. After the video, I share that the shower was the only place I could acknowledge how scared I was. During one such presentation, a mother responded to me with what I believe defines this type of trauma:“Yes, but only if you hide the knives first.”I turned to see every caregiver in the room nodding as I fought back tears and memories I had tried to forget.
We spent years cycling between doing safety evaluations (to ensure our child had no plan or intent to harm themselves) and locking sharp objects away so our child wouldn’t be triggered by them. When I took a shower, I felt safer knowing the knives were under our bed, inches away from the shower and not near my child. I have dear friends who have lost children to unexpected, impulsive acts and I lived with thisfeardaily.
Caregivers of children with mental illness often endure trauma that is rarely discussed and even less understood. Most caregivers don’t even recognize it as trauma because it happens under the guise ofparentingand fiercely loving their children. This trauma, however, changes everything about the caregiver and is essential to understand to build the tools needed to support them, and by proxy, their children.
Unrelenting fear for their children retrains the limbic system (where the amygdala, the alarm system for the brain, resides) of caregivers of children with mental illness to bypass reasoning, logic and planning and move straight to action. The brain tells the body it must now fight/flight/freeze for its life — as if a lion is chasing it. The chronic nature of this fear means the response becomes automatic and largelyunconscious.
Trauma also employs thenervous system, and all of the senses, to ensure that the body and brain will remember the event(s). The smell of a hospital, the sound of a door slamming, the sight of a child in distress may initiate this automatic fight/flight/freeze response. Trauma expert Dr. Bessel van der Kolk describes trauma as being re-experienced in the present as profoundly disturbing physical sensations and emotions that may not be consciously associated with memories of past trauma.2
A call came in from my child’s school recently that they were having a hard day. Years of calls when they were most sick meant my limbic system fired at the site of the school number. My child was no longer in crisis, this was a minor setback, but my brain and body held thememoryof when they struggled most, triggering a fight/flight/freeze response.
Everyone reacts in one of these ways when scared. I typically move straight to fight. On this day, I began to make phone calls to therapists and doctors. I likely sounded panicked and pressured. The 10-paragraph email I crafted (and then deleted) was demanding and directive in nature: asking everyone to drop everything to help my child.
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Then, inexplicably, every day after I woke up frozen and terrified. I found myself crying for little reason, unable to concentrate, or make decisions. My nervous system, now hypervigilant, continued to respond as if a lion was perpetually chasing me.
Trauma also comes with cognitive distortions about self, others/environment, and the future. The impact of a sustained fear response is that caregivers begin to perceive themselves as incompetent or damaged, they see others and the world as unsafe and unpredictable, and they may see the future as hopeless.3
After my children became sick, I continued to show up for typical mom tasks (at school, sports events, play dates), but this sneaky trauma had shifted the lens I looked at the world with. I now had many of the distortions that I taught others about. I was often stuck in self-blame,catastrophizing, all-or-nothing thinking andmind reading(believing I knew what people thought of me/my child).
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On one occasion, I went to watch my daughter perform in her first community event since she had moved to a therapeutic day school: a school play. As I went to take my seat, I alternated between perseverating on my inadequacies as a mother (I had forgotten to bring flowers like the other moms) and silently chanting: please let her be okay, please let her be okay. Years ofchronic sorrowand acute illness had trained me to expect the worst, but I desperately hoped for a win.
Just as she started her solo, the microphone cut out. No one could hear her beautiful voice. I watched in anguish as she struggled on stage. I could feel the tears coming as I started topanic. I was grabbing my husband — why did they do this to her? I got up to find someone to help fix it immediately. My brain was telling me this was somehow intentional. A cruel conspiracy to confirm that we were not worthy of being part of the community.
None of that was true — it was a technical glitch with no one to blame. My brain had its own glitch. I was horrified and ashamed at how strong, and unreasonable, my reaction was. My amazing child, everresilient, continued singing, but my own nervous system was completely undone.
Empathy and Healing
Caregivers aren’t trying to be difficult. They are terrified. They are standing sentinel protecting their children and their strong, emotional, fear-based responses may feel out-sized. These reactions will likely confound professionals trying to help their children. When we understand that these are trauma responses, we can better lead withempathyand compassion to support them. Supporting them is critical if we hope to help their children.
Dr. Stephen Porges, who developed thePolyvagalTheory for trauma, tells us that social engagement is what supports the nervous system in regulating and is a key to healing.4Connecting with others is critical to disrupting trauma yet this group of caregivers are the least likely to engage socially. The combination ofchronic sorrowand acute fear makes connection challenging.
After spending the first six years of my children’s illnesses feeling scared and alone, I made the decision to join my local SpecialEducationParent Advisory Council (SEPAC). Connecting with other caregivers allowed me to heal. I stopped feeling scared all the time and slowly reintegrated into the community. I startedlaughingagain. I could now call a friend to reality check my distortions and bypass panic. Not only did I have more emotional space for my children, I now had a tribe who understood, had resources to share, and would even bring us casseroles.
Bravery and Hope
Instead of seeing these caregivers as challenging, we should be reframing them as brave. They are bravely caring for their sick children despite their trauma. When you are working with them, acknowledge you understand how hard this must be for them. Let them know you see them. Ask them how they are caring for themselves. When others have done that for me, my nervous system calms and I become less reactive and panicked. That is the social engagement system in action.
These caregivers also need hope. They need to know their children will get better. Hiding the knives from your children should not be a norm. I reset my baseline and learned to tolerate what is intolerable. I was told, and many other caregivers I know have been, that my children will likely always have thoughts of dying. There is no other illness that I know of that would relegate families to imminent death of a child with no hope of curing them.
To give them hope, we professionals must be as brave as they are. We must demand new treatments if our current ones are causing us to extinguish hope for children. We must challenge each other — wonder what we may have missed or what we could do differently. Brave therapists, psychiatrists and doctors saved my children. They bravely shared new innovative thinking and understanding of the brain/body connection and helped to finally quiet my children’s brains. By saving my children, they saved me, allowing me to begin to heal myself.