What It Feels Like to Tread the Waters of Undiagnosed Chronic Pain

I tread water in the freezing sea. The sounds of the waves cresting and the wind howling are drowned out by the anguished cries of those around me. My limbs feel heavy. The cold pierces my muscles, chilling me to the bone. I am so tired. Above I see my mother and sister, with their arms outstretched towards me. But they are so far away. The ones in the white lab coats with stethoscopes are closer. I raise my arms to reach them. While they are not close enough to pull me out, they could still hold on to me so I don’t drown. But they don’t move. Of the hundreds of them out there, only a handful reach out with arms outstretched. There are too many of us in the water and too little of them willing to help. My energy is depleted now. I’ve been treading in this sea for too long. I just want to stop.

This is what it feels like to be living with an undiagnosed medical condition: to be lost in a sea of undiagnosed people in a broken health care system. Your loved ones too far away to help. The doctors, the ones who can help, choose not to or are unable to find the ways to.

My life wasn’t always this way. Up until seven years ago, I was like the majority of others, enjoying my life on the land of the healthy. I only waded in the waters with my severe seasonal allergies and undiagnosed leg pain, blissfully ignorant of those suffering far from the shore. Naive I was, thinking that all doctors can help you, if not able to cure you then at least treat you. I couldn’t fathom the idea of doctors not being willing or able to help their patients.

Then I got sick.

It started out as a painful headache. During the spring of eighth grade, it attacked unsuspectingly during the second lap of the 1600m. Despite the severe pounding and the sharp stabs of pain that inundated my head, I completed the race. I thought I could sleep off the pain: just take it easy for the rest of the day, get a good night’s sleep, and the headache would be gone. Except it never left.

To this day, it spends every waking moment with me, transforming into migraines at least once daily. In the beginning I tried self-medicating with over-the-counter ibuprofen. But as days turned into weeks, my mother’s worry grew with my pain. She decided to take me to the emergency room for the first time – and for the last time. The ER doctor blatantly told me that I was lying, that I was faking it, and that I was just another teenager looking for attention. I sat there in shock. Why would I fake being in constant pain? Why would I want to be tortured by my beloved trumpet or running? Reluctantly she inserted the IV into my left arm, delivering fluids and medication, and then scheduled me for a CT scan. After spending an hour in the torture chamber, and another several waiting for her to return, she strolled back into my room with a wide smile on her face. “Good news, Michelle. Your CT scan is clean,” she beamed. “You are completely healthy. The IV drugs sure helped with the pain, didn’t they?” I stare at her in disbelief, tears threatening to spill. Plastering a smile on my face, I nodded and thanked her. As we walked back to the car in the parking lot, Mom asked me if the drugs really helped with my pain. “No,” I said quietly, the pain taking my breath away. “But do you think she would have believed me, or listened to me?” I sighed, and melted into the back seat of the car, resigned.

If only it stopped there.

Almost a year after the headaches started, after myriad blood tests and scans, after countless neurology appointments and a second opinion, and after several trials of medications that only made me sicker, my health took a turn for the worse. Murphy’s law. My body became wrecked with pain: joint pain, back pain, musculoskeletal pain, chronic nausea, and the list goes on. And with that came the repeated cycle of doctor appointments, medical tests, normal results and either medication trials or, more often than not, blame and skepticism.

And during this entire process, during the repeated cycles and the daily chronic pain, I have had to live my life. Or at least attempt to be a normal high schooler and now a college student. Those attempts at normalcy have only negatively affected my relationship with doctors – they don’t believe that my pain is as severe as I say.

I don’t know how much longer I can tread in this water. After seven years I am getting tired. But I will tread for as long as I can: for my mother, for my sister, and for the patients who I will help when I become a pediatric physician. Because they aren’t alone, and they should know that their stories, and their suffering, will not go unheard.