My Illness Won’t Define Me!

Ever since I can remember I’ve always suffered from headaches so it was only normal for me to just blow this headache off as being my typical, except it wasn’t. This led me to see my primary care doctor who gave me narcotics in an attempt to treat a weeklong headache, only for themto fail. That’s when I was sent for a CT scan. I will never forget the words the technician said to me that day as she finished up with my scan, you have Chiari but it’s ok because it’s treatable.

Those words had no impact on me at the time because I had no idea what a Chiari was or even how serious it could be. So, like any normal person would do, I went home and did some internet search and that’s when the reality of the situation hit me. This had the potential to be more serious than I could ever imagine.

A week had passed and my headache was still there but much less severe. This headache just didn’t want to go away so back to the doctor I went. I was then sent for an MRI and again, it was confirmed that I did indeed have a Chiari Malformation. After getting the results I tried not to dwell on this and started to do more research to see what I was facing. The scariest scenario entailed decompression of the brain and that wasn’t the route I wanted to take.

Months later it was only the beginning of my struggle to have doctors take me seriously as no one seemed to listen; apparently Chiari wasn’t as serious to them as what I had read in medical journals. I would continue to seek help from doctors with no success only to be back where I started. This is when I gave up! I became frustrated and disgusted knowing that what I was saying wasn’t being heard. I was told time and time again that this could not be the cause of my debilitating headaches. I heard this so much that I started believing them.

That’s where I was wrong! How could I be so weak to let a doctor tell me that what I was experiencing wasn’t a big deal? How could I let them dictate my care? I wouldn’t truly realize the error of my ways until two years later when I went to see another neurologist hoping I’d get somewhere.