Living with Chiari Malformation

For most of my life, I carried an invisible weight — one that I didn’t even understand until I was 21. Growing up, I was no stranger to headaches. They were relentless, pounding in my skull like an unwelcome visitor overstaying their time. I would always describe it as the force of waves crashing against rocks, an unceasing tide of pain that pulsed at the back of my head. It became so constant that I didn’t remember what it felt like to be truly pain-free.

When I told my mother about the headaches, she brushed them off with casual phrases: “Everyone gets headaches,” or “It’s just stress.” At the time, I believed her. Maybe it was just normal. After all, she was the adult, the one who had seen more of life than I had. There was no urgency, no trip to the doctor, no scans. So I learned to live with it, trained myself to push through the fog of discomfort and pretend it wasn’t there. The pain became part of my everyday life, like a shadow following me around — unwelcome but familiar.

As I got older, things started to change. The headaches didn’t go away — in fact, they got worse — but something new crept in: back pain. At first, it was mild, annoying more than alarming. But over time, it started to affect my ability to stand for long periods. I couldn’t figure it out. I went to the doctor eventually, hoping they’d find something, but no scans of my head were done. I was told to stretch more, to watch my posture, maybe take some Panadol and try not to worry too much.

Still, something inside me told me that this wasn’t normal. I wasn’t just tired. I wasn’t just stressed. But I didn’t know how to advocate for myself. I didn’t have the words, and I didn’t have proof — only pain.

Then came the turning point, a moment that changed everything: a mild car accident. It wasn’t serious, just a small collision. No one was badly hurt, and at first, it felt like one of those random things life throws your way. An inconvenience, a form to fill out, maybe a sore neck for a few days. But as a precaution, the doctors recommended an MRI.

That scan, taken after a car crash that barely scratched the surface of my car — and seemingly my life — revealed the truth. Arnold Chiari Malformation. I had never heard of it before. The name sounded strange and clinical, something you’d find buried in a medical textbook. But there it was: a rare condition that affects about 1 in every 1,000 people. It wasn’t just headaches. My brain had literally been pressing against my skull, a condition that had been silently shaping my experiences since childhood. The back pain? That was caused by a buildup of cerebrospinal fluid in my spine, a direct result of the malformation.

When I told my mother, she was devastated. All those years she had dismissed my pain, chalked it up to stress or growing pains — now it was undeniable, written out in medical reports and MRI images. The guilt hit her hard. I could see it in her eyes, in the way she spoke to me, softer now, almost apologetic. But I didn’t blame her. How could I? Sometimes we don’t see what’s right in front of us until it’s spelled out in black and white.

Soon after the diagnosis, I underwent decompression surgery. It was an intense procedure. They removed a small piece of my skull to relieve the pressure and give my brain the space it so desperately needed. The recovery process was long and grueling. There were days when I felt like I’d never feel normal again. But eventually, the headaches dulled. The back pain eased. For the first time in years, I could breathe without the fog of constant pain.

Even though the surgery brought me physical relief, the emotional side of it all was harder to untangle. I had spent so many years doubting myself, convinced that what I felt wasn’t valid because no one else took it seriously. And my mother, despite her regret, couldn’t change the past. She still carries that guilt, but I never needed her to. I knew she did the best she could with what she knew.

Living with Arnold Chiari Malformation has taught me more than any textbook or doctor ever could. I’ve learned resilience — the kind that grows slowly and stubbornly over time. I’ve learned to listen to my body, to trust the quiet signals it sends when something isn’t right. And most of all, I’ve learned the importance of advocating for yourself, even when others don’t believe you.

Pain may have shaped my journey, but it didn’t define me. I am still here, stronger for having carried that invisible weight — and braver for having finally laid it down.