I can vividly remember the night when the pain started. It was Halloween. As any 13 year old would do, I went out trick-or-treating with my friends. We had previously convinced ourselves that we were too old for trick-or-treating, but the prospect of free candy was too difficult to resist.
As we were walking down some street where we knew one of the residents gave out king sized candy bars, it started. It started as nothing more than a pinch, a small twinge in my stomach that caught my attention. I thought little of it, and quickly concluded that I had just eaten too much candy (which wasn't unheard of for me).
When I woke up the next day, it was still there, but worse, much worse. I told my parents that I was in too much pain to go to school, but they concluded (just like I had) that I simply ate too much candy. As you could imagine, a belly ache from eating too much candy was not a cause to skip school in my parents' eyes.
I stomached through the whole school day (pun intended), but this was quickly becoming too painful to ignore.
The first doctor determined that it was nothing more than acid reflux, something I didn't even know 13 year-olds could have. I thought acid reflux was reserved for middle-aged men who ate a steak at every meal or people who didn't like fruit, but I wasn't going to argue with him. After two weeks of taking the prescribed pills, nothing changed.
Then came the first ER trip. I experienced my first, what would come to be known as, "jolt" of pain. The only way I can describe this is that my pain, which would typically rest at a painful 8 out of 10, would suddenly jump to an excruciating 10. The pain was unbearable, and no one could tell me why it was happening.
The doctors did every test you could possibly imagine, and each came back with the same diagnosis: "There's nothing there."
Soon the pain would become too distracting, forcing me to leave school, sports and all my friends for 3 months. As I lay on the couch every day watching "Jersey Shore" reruns (the selection for midday television during the week was quite limited), I knew that I wasn't just making this up in my head. I knew something was wrong.
After months of trying every medication and treatment under the sun, homeopathic or otherwise, my parents and I were left with one option. We booked an appointment at the Minneapolis Children's Hospital Pain Clinic, one of the few children's pain clinics in the country.
The night before my appointment, everything came to an emotional peak. I couldn't bear to live with this pain for the rest of my life, and I especially couldn't take what this illness did to my family anymore. My parents were so depressed and frustrated, and it absolutely killed me that there was nothing I could do about it. As I sat there sobbing, my Dad told me that I needed to believe that these people were going to find an answer. While being optimistic was not easy, I agreed to trust the process and hope for the best.
After almost 6 months of doctors' visits and pain, the pain clinic doctors diagnosed me in under 20 minutes. The answer was Descending Inhibiting Pathway Disorder, a rare nervous system disorder that causes my body to recreate pain that is not there.
The doctors informed me that there was something that originally caused the pain, whether it was a parasite, a bacterial infection, or maybe even acid reflux, but that was long gone. However, there is a miscommunication between the nerves in my entire torso region and my brain, where my nerves tell my brain that I should feel pain and my brain creates it.
Before you think, "Oh, so she just made up the pain in her head," that is not the case. The mental response is based on a physical reaction, and only 8% of the population responds this way to physical pain.
I was beyond thrilled to have been diagnosed properly, and after about a month of taking the prescribed medication and returning to my normal life, the pain was gone. I learned so much during this process, but I think the most important thing I learned was to trust my instincts. I knew deep down that I couldn't just be imagining such intense pain, and I wouldn't settle with simply living with it for the rest of my life. Thankfully my parents were just as determined as I was to find a solution, and thankfully the pain clinic doctors had seen it before.
So, if you ever find yourself in a similar situation, trust yourself. If you believe something is wrong, there probably is. Despite however many degrees may be hanging on their wall, doctors may be wrong sometimes, and at the end of the day, no one knows you better than yourself.
