I am a typical 17-year-old girl. I attend high school, where I write for the literary magazine and play tennis. I have an addiction to hair masks. My friends and I like to binge Netflix and snack on Oreos. I look and act so very ordinary.
But I am far from ordinary. Doctors say, “When you hear hoofbeats, look for horses, not zebras”—meaning, “Look for the most common conditions, not the rare ones, when making a diagnosis.” Yet, according to NORD, the Rare Disease Database, I am a zebra.
I have four rare diseases, including Chiari malformation type 1, a neurologic condition I was born with. A structural defect in my skull pushes my brain downward into my spinal canal, putting pressure on my brain and causing a cascade of neurologic and physical symptoms. My neurosurgeon from Children's National Hospital in Washington, D.C., described Chiari as having “a brain too big for your head.” I liked that description. It made me feel smart instead of broken.
Chiari affects everyone differently; some go their whole lives without symptoms, while others develop life-threatening or disabling symptoms requiring brain surgery. My symptoms occurred periodically for at least four years before my diagnosis at age 10. They included dizziness, ringing in my ears, issues with balance, and the hallmark Chiari headache. I had had a couple concussions over the years, however, and doctors attributed my symptoms to those, resulting in a delayed Chiari diagnosis.
After experiencing regular tingling and numbness in my hands and feet during the summer after fifth grade, I saw a neurologist and finally learned I had Chiari. I was then referred to a neurosurgeon to determine how to treat my malformation. I could tell my parents were scared as we visited two neurosurgeons. Because I was only 10, I didn't fully comprehend the seriousness of the situation—that would come later.
The doctors did a series of neurologic tests and looked at my MRI scan to decide whether I would need decompression surgery to relieve the pressure on my brain. Surgeries usually occur when symptoms are disabling; there is a syringomyelia, a cyst that can damage your spine; or your cerebrospinal fluid is impeded, causing increased brain pressure. Both doctors agreed it would be best to manage my Chiari by “waiting and watching.”
It was a relief to have an explanation for all my strange symptoms, but there were downsides, too. Told not to play contact sports, I gave up soccer and occasionally had to sit out gym class. I felt isolated watching my classmates run around and have fun without me, but even worse, I had an intense fear of hurting my head because head injuries can worsen Chiari. I felt frightened that I would get hurt and need brain surgery. This fear haunted me for the first couple of years after my diagnosis.
Things are easier now that I am in high school and have learned to cope with my diagnosis and symptoms. Instead of soccer, I play tennis, a sport with minimal risk of head injuries. I do suffer mild Chiari symptoms when playing tennis or exercising, but I enjoy the sport, so the pain is worth it.
My symptoms are worse than when I was diagnosed seven years ago but still manageable, and some, such as tinnitus, have mostly resolved. The headache and neck pain I experience multiple times a week are my most troublesome symptoms. I manage my pain by not overexerting myself, maintaining good posture, and hydrating. A warm rice bag and acetaminophen usually relieve the pain, and I don't require prescription medication.
Annually, I get an MRI and visit my neurosurgeon. Because Chiari can be progressive, I always experience some apprehension before getting the results of my MRI. But having Chiari has taught me to be resilient and live in the present. I have learned to manage my anxiety and pain by accepting it. While I may feel pain or discomfort, I know it is temporary and I will feel better. This is where I focus my energy. It sounds simple, but acceptance is a lesson I have learned over many years.
Having Chiari also has taught me gratitude. This condition doesn't define me. It is only one very small piece of who I am, and I am so thankful for the life I lead. While my peers may want to be viewed as special (or even famous on TikTok), I am grateful that I am an “ordinary girl” because I have learned that this is truly a gift.
