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Five years ago, I wrote about parental trauma. Since then, through my own experience parenting a child with PANDAS/AE and sitting with hundreds of parents raising children with complex medical, developmental, or psychiatric needs, I’ve learned this: We’ve been approaching it all wrong.
This week, as we commemorate PANDAS Awareness Day, I’m reminded that behind every child’s battle with neuroimmune illness is a parent fighting a parallel one, often invisible, misunderstood, and dismissed. Parental PTSD is real, and recognizing it is an essential part of raising awareness.
Understanding Parental PTSD: Two Interwoven Layers
Parental trauma is complex, and it could be best understood as having two interconnected elements:
1. The nervous system injury
Trauma changes how our nervous system functions, leaving it overreactive and on high alert. For many of us, the body feels stuck in survival mode, tense, vigilant, always bracing for the next threat.
2. The narrative and history we carry
Each of us holds a personal story shaped by our early experiences, relationships, culture, and health. Trauma attaches itself to that story, influencing how we see ourselves as parents and as people.
Healing requires tending to the body’s survival adaptations and the stories that shape our identity.
When Our Nervous System Gets Hijacked
It’s lying awake at 2 a.m., even though our child is finally sleeping, because our nervous system has forgotten how to turn off.
It’s our heart racing when we see the school’s number pop up on the phone, even when it’s something routine.
It’s the way our body braces every time we walk into a hospital, reacting to the smells and sights—and we can’t control it.
Our body learns that danger is always around the corner because, too often, it is: a seizure, a meltdown, a medical emergency, another call from school. We worry when they go to school, when they can’t go to school, in social settings, and when life narrows until isolation feels complete.
Our nervous system adapts by staying perpetually ready for the next hit. This isn’t ordinary stress; it’s the body doing exactly what it was designed to do in the face of chronic, unpredictable threat. The problem is, it never gets to turn off.
And the toll doesn’t stop at sleepless nights or racing hearts. Trauma embeds itself in the body. The headaches, the gut issues, the autoimmune flares, the exhaustion—it all shows up. Many of us live with chronic fatigue or insomnia born of constant vigilance, working intentionally to keep functioning without collapsing.
Regulation and Individual Differences
It is possible to work on nervous system regulation, but not every approach works for everyone. Stress affects the body differently depending on age, genetics, health, history, and support systems.
Many of us find relief through practical tools that “biohack” dysregulation and calm the nervous system. But during an active flare—when a child’s symptoms are constant and acute—life can feel like a battlefield, and even the best tools may feel out of reach.
Helpful modalities include:
- Somatic Experiencing (SE): Releases stored survival responses and restores regulation.
- Sensorimotor Psychotherapy: Combines body awareness with attachment and trauma processing.
- Polyvagal-Informed Therapy, Safe and Sound Protocol (SSP), and Rest and Restore Protocol (RRP): Supports vagal tone, social engagement, and safety.
- Biofeedback and Neurofeedback: Train the nervous system to self-regulate.
- Experiential and Expressive Therapies: Foster regulation through embodiment, sensory work, and bilateral integration.
Memory-processing approaches can also support regulation:
- EMDR: Reprocesses memories using bilateral stimulation.
- Brainspotting: Accesses trauma through focused eye positions.
- Accelerated Resolution Therapy (ART): Uses guided imagery and eye movements to shift imprints.
Biohacking dysregulation is valuable, but it’s only one part of the broader process of trauma integration.
The Stories We Tell Ourselves
Trauma isn’t only stored in the body; it also reshapes the story we tell ourselves about who we are. It creates a painful gap between the life we hoped for before having children and the reality of parenting a child with complex conditions. The ways we were raised, the vows we made to do it the same or the opposite, the dreams we once held—all drift further away under the weight of stress and dread.
This is where anticipatory trauma takes hold. Parental PTSD isn’t a single event we recover from; it’s flare after flare, dismissal after dismissal, always bracing for the next blow. The trauma lies not only in each crisis but in the ongoing erosion of the story we thought we were living—and in the constant fear that the worst is still ahead.
Layered on top are the unspoken traumas:
- It strains marriages, friendships, and family ties.
- It shatters trust when doctors or schools gaslight and dismiss.
- It brings identity loss, the grief for who we used to be, and the life we imagined.
- It reopens old wounds, forcing us to fight hard not to pass them down.
The Narrative Dimension: Learning to Live With Pain That Does Not Go Away
The fear that something terrible could happen lingers because, in our world, terrible things really do happen.
In complex and ongoing situations, healing isn’t about eliminating pain; it’s about expanding our capacity to hold it all—the terror and the love, the exhaustion and the meaning, the rage and the tenderness—without being consumed by any of it.
Intentional Self-Attunement: Expanding the Capacity to Endure
Self-compassion is often described as a core practice in trauma therapy. Yet for many survivors, especially those with complex or developmental trauma, it can feel almost impossible to access.
The traditional triad of self-compassion includes mindfulness, common humanity, and self-kindness. These elements are not equally accessible to everyone; they depend on our context, history, and nervous system state.
For many of us, common humanity is the most approachable entry point. Recognizing that suffering is part of being human helps counter the isolating belief that “I’m the only one” and softens the corrosive shame of feeling defective.
Mindfulness, paying attention to the present moment without judgment, is another core piece. It’s a muscle we can strengthen gradually, especially when paired with individualized strategies for regulating the body.
But self-kindness is often the hardest. Extending warmth toward ourselves when we feel drained, inadequate, or ashamed can feel unsafe or impossible.
This is where intentional self-attunement becomes essential. When we try to fix how we feel, our body receives the signal that something is wrong, which can create even more tension. Breath shortens, muscles tighten, and awareness narrows (read more about the neuroscience of gratitude and trauma here).
When we practice self-attunement instead, the opposite happens: breath deepens, awareness widens, and the nervous system begins slowly to move toward regulation. This doesn’t erase pain, but it expands our capacity to hold it without being overwhelmed.
This shift from striving for kindness to practicing attunement allows us to relate differently to ourselves. Over time, the nervous system learns that being with our experience, however painful, is survivable. We can weather it with presence—and eventually recognize it as part of being fully alive.
Living Alongside the Pain
We won’t tell ourselves it gets easier, because for many families, it doesn’t. Conditions progress. Behaviors intensify. Supports collapse.
But something can shift in how we meet it all. Parents who practice intentional self-attunement still grieve. They still rage. They still collapse some days. But they’re no longer at war within themselves. They discover they can be broken and whole at the same time and that joy can coexist with grief and pain.
Expressive Trauma Integration (ETI) Simplified Self-Compassion: Intentional Self-Attunement
Think of a situation in your life that feels distressing. Ask yourself:
- What do I feel right now? (Awareness recognizing the feeling.)
- On a scale of 1–10, how strong is this feeling? (1 = mild, 10 = intense.)
Then say to yourself:
- “This feeling is part of life; everyone feels like this sometimes.” (Common humanity.)
- “It’s okay. I am okay. I am [your name]. I am here. I am now. Right now, I am safe.”
Check in again and rate the feeling from 1–10. Repeat until the rating drops to 5 or below.
