Trapped In My Own Body: My Life Experience With PANDAS/PANS
I didn’t know anything was wrong at first. It started as a normal morning. My mom woke me up for school, I ate breakfast, and everything felt routine. I went upstairs to my parents’ bathroom, wanting to use it. While I was in there, I noticed a book sitting on the counter with a thin layer of dust on it. Without thinking, I ran my finger across the top.
I remember staring at the dust on my hand and feeling mildly grossed out. I washed it off at the sink and moved on, not giving it a second thought. But only a few minutes later, something shifted. My feet started to hurt in a way I had never felt before. It wasn’t the kind of pain that comes from falling or bumping into something. It was deeper, overwhelming, and confusing.
As I stood there, my entire body began to feel overloaded. Every sense felt like it was turned up to its maximum volume. The more I thought about the dust, the worse the pain became. My mind latched onto it, and suddenly my feet felt like they were on fire. I didn’t know how to react. I didn’t know how to explain it. All I could do was lie down and cry for my mom.
That was the moment I realized something wasn’t right.
My mind went completely blank. The pain consumed everything. I couldn’t fix it because nothing was visibly wrong. I hadn’t hurt myself. There was no cut, no bruise, nothing to point to. It was all happening inside my body, and that made it even scarier. The only thing that helped was distraction. My mom had me watch TV or play with our dog, anything to take my focus away from the pain. When my mind shifted, the pain eased. That confused me even more.
Before PANDAS, life was simple. I don’t remember much because nothing stood out dramatically. I was just a normal kid. I played with my friends, ran around outside, and lived without thinking about my body or my mind. People would probably have described me as lively and adventurous, always wanting to do something or be in motion.
The early symptoms were the most confusing part. For some reason, my feet became the main target. To this day, I still don’t understand why. Wearing socks or shoes made them feel trapped. Lying in bed at night made the pain worse. Sometimes it would wake me up in the middle of the night, and all I could think about was how badly my feet hurt and how I couldn’t escape it.
The hardest symptoms to live with weren’t just the physical pain, but the anger that came with it. I didn’t understand what was happening to me, and neither did anyone else. As a six-year-old, I couldn’t process why my body felt like it was betraying me. That frustration turned into anger. Sometimes I would lash out, and afterward I would feel horrible about it. I didn’t want to be that kid, but I didn’t know how to stop it.
The diagnosis journey was exhausting. I was constantly taken to doctors, and no one seemed to have answers. I had blood drawn over and over again. For a kid my size, the number of tests and appointments felt endless. Every time we went, I hoped someone would finally explain what was wrong with me, but they never could.
At school, things weren’t much easier. Helper teachers who didn’t understand what was going on thought I was just being disruptive or difficult. I was yelled at and denied accommodations that I desperately needed to calm myself down. I don’t blame them. They didn’t know. But at the time, it made me feel even more misunderstood and alone.
One moment still stands out to me more than any other.
I was in first grade, riding the bus home with two of my friends. We were talking about recess, and the conversation slowly shifted to sports. Baseball has always been important to me. It runs in my family, and I’ve always loved it. One of my friends started arguing that football was better because you could make contact with people. We went back and forth, and then he said something that pushed me over the edge.
He said baseball was for babies.
Suddenly, everything inside me exploded. I felt pain surge through my body, my senses completely overloaded. I didn’t know how to release it. Before I could think, I jumped at him and hit him five times in the back. The bus went silent. My friend started crying, and the reality of what I had done hit me all at once.
I tried to apologize right there, trying to explain myself, but he wouldn’t talk to me. He got off the bus still crying, and my mind spiraled. I yelled at myself internally, asking why I did that, why I couldn’t control myself. When I got home, I ran to my room and hid until my mom called me downstairs.
She showed me a photo my friend’s mom had sent her. Seeing his face broke me. I burst into tears and told her everything. She was upset, but she made me get in the car and drive to his house to apologize. When we arrived, his mom looked angry, and my friend still had tears in his eyes. I could barely make eye contact as I apologized. I couldn’t tell if he forgave me or not.
That night, I cried and blamed myself. I was terrified that I had ruined my friendship and damaged my relationship with others who saw it happen. I wish I had known then that it wasn’t because I was a bad kid. It wasn’t who I was. It was my condition. Maybe I wouldn’t have been so hard on myself if I had understood that.
PANDAS affected every relationship in my life. I argued more with my friends and my brothers. There were days when no one wanted to be around me, and I don’t blame them. I didn’t understand why I was pushing people away, but it hurt deeply. Sometimes I felt like the only way to protect others was to isolate myself.
At school, I would sit alone in the bathroom, waiting to calm down before going back to class. I never wanted to hurt anyone or disrupt anything. I just wanted to feel normal again.
What helped me survive those years were the small things. Playing video games with my brothers. Watching TV. Every morning, I watched Daniel Tiger’s Neighborhood on PBS Kids, and it gave me a sense of calm and distraction from the pain in my feet.
But the biggest source of strength was my dog, George.
My mom reminded me every day that George needed to go for a walk. That responsibility forced me to put on my shoes and push through the discomfort, because I loved him more than anything. Somehow, George always knew when I was upset. He would come sit next to me, and petting him would calm me down. Taking care of him taught me something important about myself: even when I was struggling, I could still show up for others.
That realization stuck with me.
One thing I wish more people understood about PANDAS/PANS is the financial burden. The treatments, tests, and doctor visits are incredibly expensive. Those visits were the reason I got better, but not every family can afford them. If there’s one way people can help, it’s by donating or supporting organizations that help families access treatment. No child should have to suffer longer because of money.
To anyone going through PANDAS/PANS, or to parents watching their child struggle, I want you to know this: you are not alone. There are support groups, resources, and people who understand what you’re facing, even when it feels isolating.
Looking back, PANDAS/PANS shaped who I am today. It made me more empathetic, more driven, and more aware of the struggles other people carry silently. It helped me realize how much I care about helping others, even when it’s hard. There were moments when it felt endless, when it felt like there was no light ahead, but there was.
If my story helps even one person feel less alone, then it’s worth telling. Eventually, the pain eases. The confusion fades. And one day, you realize that even though this condition changed your life, it didn’t break you. It made you stronger.
– Ben
Gabriella True
