"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."
"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. 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."
"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."
Parental PTSD commonly accompanies caring for children with neuroimmune, developmental, or psychiatric conditions such as PANDAS/AE. Parental trauma operates on two interwoven layers: a nervous-system injury that leaves the body overreactive, hypervigilant, and stuck in survival mode, and a narrative layer formed by personal history, relationships, culture, and health that shapes parental identity. Symptoms include insomnia, heart racing at routine calls, automatic bodily reactions to hospitals, chronic worry about school and social situations, and progressive social isolation. Parental trauma is often invisible, misunderstood, and dismissed. Healing requires tending to both the body's survival adaptations and the stories that shape identity, alongside recognition and support.
Read at Psychology Today
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