What Hasn’t Killed Me Yet:
A Life with Chronic Illness

“I grieved the carefree days when I did not have to think about pain. I watched from the sidelines as others my age hit milestones—graduation, driving, dating—that I could only dream of.”

In early 2020, at 17, during the COVID-19 lockdown, I decorated my door. At the top, centred in bold letters, I wrote “STAY FOCUSED.” It was my way of reminding myself to stay ambitious and productive. I was an overachiever, determined to push forward no matter the obstacles. Even as waves of depression crept in, triggered by strained friendships and constant flu-like symptoms, that door kept me going. Back then, I believed I could manage anything if I worked hard enough. That illusion shattered one random day in August 2020. That morning began like any other, but the pain I felt was unlike anything I had ever known. Half my face was paralyzed, my stomach knotted in violent cramps, my ears rang, and my body throbbed with deep muscle aches. Nausea came in waves, and I was overtaken by fatigue. The symptoms left me crippled with fear. By the end of that day, a question haunted me: What if this did not go away? What if this was my life now? I quickly pushed the thought aside, assuming doctors would fix it and I would go back to normal.

But days dragged into months, and I remained bedridden. My life as I knew it came to a halt. The pain was constant, and loneliness crept in deeper. I spent countless hours in ERs, bouncing from specialist to specialist, desperate for a diagnosis—but found none. The medical system, I learned, was not what I had imagined. There were no quick fixes. I stared at the goals written on my door, mocking me. I was not hustling or achieving anything. I was trapped in a body that no longer worked.

The days blurred together, each one longer than the last. My body felt like it was screaming. I was in a constant state of crisis, yet no one, not even myself, could help. The physical agony was excruciating, but the mental toll was worse. I grieved the carefree days when I did not have to think about pain. I watched from the sidelines as others my age hit milestones—graduation, driving, dating—that I could only dream of. Eventually, my symptoms were attributed to a malfunction in the autonomic part of my nervous system. No one knew why, and there was no cure.

I had once been full of energy, but that version of me felt distant. My body had turned against me, stripping away everything that made me who I was. There were many dark moments where I felt like giving up. There were times when my heart raced at 200 beats per minute, my blood pressure dropped, and the pain was so intense I did not think I would survive. I wondered if this was what dying felt like.

The thing is, I did not die.

Every day, I woke up still trapped in this body, still sick, still wondering: What if this does not go away? I still wonder. I have dreams—of a family, of a normal life—but this illness does not fit into that equation. I have learned that suffering has no limits. I have been on the brink of death many times, but I am still here. What my illness has taught me is that death does not come just because the pain is unbearable. It comes when it comes.

Even now, I look at the door I decorated years ago. The words “STAY FOCUSED” belong to someone else, someone who believed that with enough determination, they could overcome anything. That was a healthy person’s mindset—a privilege I did not know I had. Still, I try to hold on to hope. I do what I can—write and spread awareness about my disease. Perhaps one day I will wake up healthy again, just as abruptly as I once woke up ill.