Chapter 1 : I Thought It Was Stress; My Life Before the SLE Diagnosis

10th June 2025

"Ouch."

Kaki kiri ku tiba-tiba lenguh. Kebas. It happened when I was on the train. I gripped the pole and said nothing. 

"It's the shoes." I thought 

They were cheap, bought off TikTok in a moment of impulse-scrolling; bright, cheerful, and, it turned out, entirely unsuited to the life I was asking them to carry. New shoes. Long days on tired feet. The kind of arithmetic an intern does when every ringgit has somewhere else to be. 

The stomachache trouble came next, though I didn't let myself call it that yet. It would arrive in the middle of the office, sudden and insistent, and I'd excuse myself without meeting anyone's eyes, already rehearsing the explanation before I'd even reached the door. 

Stress. New job stress. New-everything stress. It's remarkable, really, how much a person can explain away when they are young, and busy, and surrounded by colleagues who all seem, infuriatingly, fine.

And then there were the evenings.

I'd step outside just as the sky began to bruise into orange and pink. The kind of sunset that's supposed to slow your breathing down, not speed up your pulse. But my legs would tighten on cue, as though standing still to admire something so ordinary was already an unreasonable demand. I moved carefully after that. Cara aku berjalan bila kaki ku kebas sepeti perempuan mengandung. 

It was the shoes, I decided. It had to be. It was easier, somehow, to believe in something so small.

14th June 2025 

My internship ended on the 13th. There was a farewell party — a good one, warm in the way only shared food can make a room warm. I'd brought Nasi Tomato, the rice still faintly steaming in its container, carrying that particular smell of spice and something like home. I handed out the gifts I'd chosen, one by one, watching faces soften as hands closed around them. I've always loved that moment — the giving more than the receiving. 

My right ear had been throbbing for days — a deep ache that seemed to radiate straight into the bone of my skull. And beneath the ache, a ringing that never let up, that had simply moved in and made itself permanent, filling every silence with noise no one else could hear. 

There was nothing to do but to bear it, hold it, keep walking forward as if nothing were wrong. I didn't tell anyone. Part of me genuinely believed it would resolve on its own, the way small things sometimes do. Around the same time, an ulcer inside my mouth. When my mother suggested a hike, I said yes, with some part of me hoping the fresh air, the movement, might shake loose whatever this was. 

It didn't. My legs gave out long before the trail did, and I felt her glance over more than once, that quiet, searching look mothers give when they sense something is wrong before they have the words for it. I had no answer for her. I didn't have one for myself either.

And my right ear kept ringing for the whole month.