Our friend gave ASPIRE permission to share this letter to her 14-year-old self. Many of us know how it feels to be too affected by PANS/PANDAS/BGE to go to school. We have felt how scary it is to miss out on that part of our life and wonder if we will ever feel better enough to do things we want to. But now that she is 22 years old and in a much better place, although still dealing with symptoms, she brings so much hope and understanding to this plight; I am sure it will resonate with many of our fellow PANS/PANDAS warriors and their families. To read more of her posts, please follow on Instagram at ae.pans.my.journey.
Dear 14-year-old me,
I know you’re excited to go to high school, and you expect that in 4 years you’ll be going to college.
I know you don’t understand what’s going on. Why 3 months ago everything was fine but now you’re losing the ability to swallow, read and write. Why your love of school is becoming replaced by constant fear, panic attacks, headaches, and doctors telling you you’re not trying.
I know school is getting too hard but I know you’re gonna go anyways. I wish I could be there to tell you it’s ok to take a break, but I know you wouldn’t have listened anyways.
A few months later, when you walk out of the classroom for the last time, I wish I could have been there to tell you you’re not failing. I wish I could tell you what’s wrong. I wish it didn’t have to take a few more years for you to find that out. Don’t ask me why it had to be that way. I don’t think I’ll ever have an answer.
What I can say is,
What you’re about to go through is going to test your faith but also bring you closer to God. You’re gonna end up praying even when you’re not quite sure God is listening anymore.
Life is going to throw more at you than you ever thought you could handle. You’re gonna feel alone and scared, but it’s also going to teach you to block out the noise of people saying you can’t, including your own voice sometimes. You’ll learn you have the power to believe in yourself and fight for yourself, and forgive yourself. You’ll learn to appreciate every good moment and live for today because you don’t know what tomorrow holds.
You’re still gonna struggle, you won’t always get it right, but you’re gonna learn to listen to your body more. I wish I could tell you that all the hard and scary stuff will go away. I can’t tell you that. I can tell you that one day you will find a doctor that understands you. And 8 years from now, you will get to college. You will get there in your own way and in your own time. You
might still not be “better,” but you’re gonna get to live again; you’re gonna make progress. The path to get there will be something you could have never imagined but it’s also going to teach you more than high school ever would.
Your 22-year-old self