Trust Your Gut as a PANS ParentSep 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:
- I was already deeply distraught from watching my daughter slip away from me
- I desperately needed help to help my daughter and I felt like that help was being withheld from me
- 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
- 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!