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Trust Your Gut as a PANS Parent

parenting Sep 09, 2022

This quote about trusting your gut reminded me of how often our gut instinct is discounted as PANS parents.

Unfortunately, I had way too many experiences as a PANS parent where  I was dismissed, devalued, and gaslighted by doctors, friends, teachers, school personnel and even family members, about my daughter's illness.

This was devastating, disheartening and confusing for many reasons:

  1. I was already deeply distraught from watching my daughter slip away from me
  2. I desperately needed help to help my daughter and I felt like that help was being withheld from me
  3. I already felt incredibly alone in the experience of having a PANS child, and now, in addition, I was burdened by feelings of hurt and betrayal by people I was "supposed" to be able to trust
  4. I was already grieving many things (loss of a healthy child, loss of what I had wished for her as a child, and for myself as a mother) and I didn't need to add more loss to my plate

Processing the shock, anger, hurt and sadness of having a child with PANS and ALSO being told that my gut instinct was wrong, has taken quite a while.  The feelings still bubble up from time to time.  This is complex grief--nobody should go be left to feel alone and unheard when you have a sick child.  That's almost unbearable.  

Since some time has passed since these really awful experiences, I am experiencing gratitude of being in the role as a therapist and as a coach for PANS families. Being able to provide support, validation and encouragement for PANS families is healing for me because it was what I needed years ago.    

 I have learned an important lesson--I can't ignore that gut instinct and I need to trust that I am the expert on my PANS daughter.  Sticking to that has helped me steer clear of people who create doubt and project their insecurity onto me.  

I encourage each of you to listen to that feeling in your gut, because you know your child the best!