Feeling Shamed as a PANS ParentJan 04, 2021
Shame is an intense emotion that causes us to feel that we are bad and inadequate on a deep level. As PANS parents, we are often subjected to many forms of judgment and questioning, which can trigger intense feelings of shame.
My experience with feeling shamed as a PANS parent
I share my story with other PANS parents because I want you to know that there is hope, and that things truly do get better. With that being said, I also want you to know that even though our PANS family is well into recovery, we still face the hardships of feeling shamed, judged or misunderstood as a PANS parent on a semi-regular basis.
In fact, what brought me to write this blog post was a difficult interaction that I had with a practitioner. When I first began my relationship with this practitioner, I asked if it was possible to work from an integrative perspective, because I felt that was very important to me. I have found that a mix of both holistic natural treatment and medications have worked best for my family. I understand that not everyone finds this to be true, and I respect that.
As this homeopath and I got further into treatment, I learned that she was not supporting my decisions to use medication as part of my daughter's treatment. Not only did she not support it, but she made me feel terrible about it. It's been weighing heavily on my heart because she is someone that I trusted.
This glimpse into PANS parent shaming began at the very beginning of my family's journey when we first started to learn about this disorder and determine what treatment plan would work best.
As a baby, my daughter wouldn't eat. Do you know how terrifying that is? I actually had one practitioner ask me: well, what are you doing? As if it was my fault that my child wasn't able to eat. That still hurts to think about. I felt like I was pouring everything I had into trying to help my daughter, and I still had doctors, friends, and family acting like it was my fault or that I was making everything up.
Why the shaming?
I've experienced all kinds of hurtful comments and judgments, and it still stings. It's not something that you get used to. I think when it comes down to it, if you are feeling shamed by friends and/or family members, it's most likely because they just don't understand PANS. You have to begin to take comments in one ear and out the other, shake it off, and remember that you know your child best.
If you are feeling judged or mislead by doctors, it could also be their lack of understanding depending on who they are and what they specialize in. I find that many specialists have a "my way or the highway" kind of thinking, which often leads to not seeing things eye to eye all the time.
What to do about it?
As PANS parents, we have to keep in mind that we are our child's biggest advocate. If something doesn't feel right to us, don't do it. If something does feel right to us that others may not agree with, try it anyway.
It's so important to have some sort of community that you're a part of and can feel comfortable going to with questions or just to vent. Various online communities have worked best for me. Sometimes you just need someone who is going through a similar experience as you.
I would love to offer support as you navigate your way through this difficult time. If you are in need of a community that you can come to for advice, I have a private free Facebook group. You can join here.