It’s not just you.
When I first read about the Caregiver Burden Index in relation to PANDAS/PANS families, I was relieved. I harbored a lot of guilt inside feeling the way I did, the heavy blanket of depression and apathy that I started to pull over me after years into the fight. The ‘score’ is so high for many reasons: the treatments are not streamlined, and there is no one way out. What works for one will not always work for another and it is different for every child and their comorbid conditions. There is a lot of feeling invalidated when visiting medical professionals for help and they often suggest there is nothing wrong but a behavioral issue. There is an unbelievable level of exhaustion on top of missed work and missed school. The symptoms are difficult to manage in most cases, and let’s be real, sometimes these kids are just mean to us the whole time. PANDAS/PANS scores are similar to that of Alzheimer’s and even higher than cancer patients.
My personal experience with caregiver burden comes from the previously mentioned issues and more. It’s definitely difficult raising a child with a struggle like this. There is a lot of guilt and shame on a daily basis, along with the micromanagement and attempts to predict triggers to avoid them. Consciously reminding myself daily that I love this child, even though he seems to hate me. Trying to separate the child from the beast. Lots of trying, lots of failing. Very little room for success and positivity. It can get lonely very quickly. If you know a family diagnosed with PANDAS/PANS, please keep inviting us. Please keep checking on us. Please keep being there!
If you identify with this and would like to learn more, read here about coping with caregiver stress.
It’s not in your head.
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