Chapter 2 : SLE in Vietnam. No Medicine, No Diagnosis, No Idea
Before I knew it was Lupus: My Vietnam Story
This trip had been a dream since 2024. My family and I had planned it carefully, saved for it, looked forward to it the way you look forward to something you're afraid of. Vietnam. Sapa. Hanoi. What I didn't plan for was arriving with a body that was quietly falling apart.
The whole of June had already been unkind. Ulcers had taken up residence inside my mouth, raw and stubborn, turning every meal into a small negotiation. My right ear never stopped ringing that persistent, maddening hum that lived just beneath every conversation, every laugh, every quiet moment. On the flight over, I prayed. Not dramatically, just sincerely 'please, don't let my ears hurt on the plane'. A small prayer for a body I didn't yet understand was waging war against itself.
We landed in the morning and boarded a bus headed straight for Sapa. The highway unfolded into something I wasn't prepared for: mountains rolling endlessly on both sides, terraced fields carved into the hillsides in that familiar paddy-field shape that reminded me of Bandung, Indonesia. It was breathtaking. I wanted to sit up and stare.
Then my neck cramped.
It seized without warning, sharp and sudden, the kind of pain that makes you go very still and breathe very carefully. I said nothing. Luckily, the bus carried only twenty of us, and the seat beside me was empty. I shifted quietly, lay down across the space, and let the mountain scenery scroll past the window above me while I waited for the pain to loosen its grip.
By the time we arrived, something heavier had settled over all of us. My dad, who has Parkinson, suddenly couldn't move. Just like that, in the middle of everything. My mother's worry filled the air instantly, that specific, silent kind of panic only families recognize in each other without a word being said. I stood there holding my own pain while watching my parents navigate theirs, and something in me simply gave way.
At the Lao Cai railway station, our guide wanted photos. Bandar yang sangat meriah. Lights, colour, a place utterly indifferent to how tired we were. I didn't want to be in any photo. I wasn't wearing makeup. I felt everything except photogenic. But the guide was cheerful in that relentless way guides are, and so I stood where I was told and smiled like I meant it.
That night, my legs cramped again. Aku sapu minyak yuyi, urut kakiku dan betis.
It helped, a little. Not enough.
And for a few hours at least, my body let me rest.
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