Gaslit All Around: The Hidden Trauma of PANDAS Parents
Personal Perspective: Gaslighting vs. healthy self-doubt in parents of kids with PANDAS.
Posted March 29, 2025 | Reviewed by Michelle Quirk
As a PANDAS /AE mom myself, I recognize in the parents I see as a therapist that bone-deep exhaustion—not just from sleepless nights and relentless worry but from the constant battle to be believed and to find real help. (PANDAS/AE is the acronym for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections /autoimmune encephalitis.)
I especially remember one intake at a hospital neurology department—testing we could only access there. I was eight months into home hospitalization for my son and emotionally spent. In front of me sat a young neurologist, taking notes.
I was already six years into PANDAS/AE parenting , working with some of the most complex cases. I had read everything there was to read, understood the medical protocols, and had one child in full remission.
Not that it should have mattered, but this doctor didn't know I was deeply informed. To him, I was a tired, middle-aged woman, overwhelmed and emotional. And that's all he could see.
I sat there, talking fast, sharing the overwhelming story of the past few years. My heart was pounding. I could feel the tears close.
Instead of offering sympathy or saying something like, "I can see this is painful for you. I'm so sorry," he said, "Are you sure there's no family history of mental illness?"
I stood up, trying not to cry. I said, "Nothing out of the ordinary. This is not a mental health issue. A child doesn't change overnight after an infection and return to baseline with steroids. I feel very uncomfortable here right now."
He replied, "So do I. You're talking a mile a minute, and it's very overwhelming."
The room fell silent.
I already knew this wasn't the place for us. I just needed to get through the appointment. The last thing I needed was to be labeled an "overreactive mother" in my child's chart.
So, I stayed quiet, using what little energy I had left to push through. I tried to shift the tone, sharing a few clinical anecdotes and citing recent studies—anything to get us out of there.
When I left, I called our neurologist and told him about the appointment. He was kind, sympathetic, and validating.
But it stung again as if my voice wasn't enough. I needed someone else to confirm that I wasn't imagining things or overreacting to things.
I silently cried again.
And this was just one example. I've had countless encounters like this—with doctors, nurses, school staff, therapists, friends, and family members. Some, still, eight years after the initial diagnosis, continue to gaslight me as a parent.
Most of the time, I don't share what I know with these people. Every once in a while, I send a medical article or a published story. The responses are predictable: "Just cut out screens—your kid will be fine." Or "Let them eat gluten like all the other kids, and they'll be fine."
The insidious thing about gaslighting is that it chips away at us until we begin to doubt our own lived experiences.
Gaslighting vs. "Good Enough" Self-Doubt
There's a crucial distinction between the typical self-questioning all parents experience and the destructive self-doubt that results from gaslighting.
Healthy self-doubt is self-questioning that helps us grow as parents. We reflect, adjust, and learn. We might consult books, ask trusted confidantes, or seek professional advice while honoring our innate understanding of our child. This self-evaluation form is a hallmark of "good enough parenting." It means that we sometimes make difficult and painful mistakes and take ownership; we go back to reattune with our children, demonstrate responsibility, and display an example that we are not perfect but "good enough."
Gaslighting, in contrast, attacks our fundamental trust in ourselves. It is when others dismiss our experience with our children. Their negating of our lived experience sounds like, "There's nothing wrong with your child that better discipline wouldn't fix" when you've watched your previously well-adjusted child develop severe separation anxiety , obsessive-compulsive disorder (OCD), and tics overnight after an infection. You are repeatedly told that you're "just an anxious parent" when your child is unable to perform basic tasks they mastered a few weeks ago.
The difference lies in the outcome: Healthy self-doubt demonstrates that, like everything else, this is work in progress in becoming more aware parents; gaslighting destabilizes our core understanding of our children and ourselves. One builds confidence over time; the other systematically destroys it.
For PANDAS/PANS/AE parents, this distinction is crucial. When we question our approach to helping our children through this illness, that's healthy and necessary. When we're made to ask whether our children are even ill in the first place—despite clear evidence of dramatic, sudden changes—that's gaslighting, and it's harmful to both us and our children.
When We Start Doubting Ourselves
The constant dismissal takes its toll on PANDAS/PANS/AE families. Over time, it chips away at our confidence in painful, invisible ways:
This quiet unraveling doesn’t happen all at once. It’s the slow damage of being doubted and dismissed. By the time families reach real help, they’ve often already endured years of quiet trauma .
Finding Our Inner Compass
Yet something remarkable happens on this challenging journey, and we are usually unaware of it.
In this terrible, painful, soul-draining journey of watching my beloved child struggle so profoundly, I've found unexpected inner resources.
What rises is an inner voice of conviction that becomes our compass to navigate forward. When everything else is stripped away—the career ambitions put on hold, the friendships that couldn't withstand the stress, the simple joys of typical parenting—I discover clarity on how to move forward and listen to trusted companions in this journey.
In this process, we can learn to hear our voice above the noise. We can become less affected by the opinions of those who haven't walked in our shoes. We can develop a keen discernment about which medical advice to follow and which to reject.
This isn’t the path we expected to walk. But, along the way, we’ve found a kind of strength we didn’t know we had. It stays with us and becomes something we pass on to our children: the consistent message that they matter, and this too will get better, and no matter what, we are here for them.
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Odelya Gertel Kraybill, PhD, LCPC, is a psychoneuroimmunology and trauma therapist, scholar, and neurodivergent parenting expert.
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This article is part of the Bringwise Psychology Journal — daily insights on human behavior, mental health, and personal growth.