The Body That Betrayed Me: Living with Illness, Holding onto Dignity
“I had a plan. I was supposed to reach stability before life got hard. Instead, life changed without asking me first.”
by Candy Chia.
Candy is passionate about mental wellness and supporting people with special needs. She believes that stress and emotions stuck in the body can lead to physical illness. At 15, she overcame Guillain-Barré Syndrome, and since 2019, she has been living with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Despite the challenges, she embraces her journey with courage and compassion, and is dedicated to helping others heal and grow.
An Early Battle, and an Even Earlier Loss
My journey with illness began early. In December 1989, shortly after completing Secondary 2, I was diagnosed with Guillain-Barré Syndrome (GBS). It started with numbness and weakness in my legs. Within just three days of hospitalisation at TTSH, I was fully paralysed from my hands to my feet. I was only the fourth known case in Singapore at the time.
My most vivid memory from those early days was the constant stream of blood draws—needles every day—and the never-ending exams by doctors and medical students, all testing my weakening nerve sensations and fading muscle strength. It was terrifying to feel myself disappear into my own body.
Recovery took everything. I spent six months in the hospital and two full years in physiotherapy, relying on walking aids before being declared fully recovered.
But GBS wasn’t the only challenge I faced. I grew up in a deeply abusive household. My mother died when I was four. My father remarried when I was five, and my stepmother was abusive throughout my childhood. At 21, I was chased out of my home. From then until 2021, I supported my older brother, who battled drug addiction and later severe mental illness. Eventually, I had to file a Personal Protection Order (PPO) against him due to his escalating violence.
Because of the financial strain of my earlier illness, I had to leave school after Secondary 4 to repay my hospital bills.
A Life Rebuilt—Then Disrupted Again
Despite these setbacks, I built a meaningful career. By 2019, I was thriving as a special needs educator. I had just received my 10-year service award, was promoted to Head of Department for the Play Department, and led the Cooking CCA. For the first time in my life, I felt like I was building something stable—something I could call my own.
Then, the symptoms returned—numbness, weakness. I was diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), a rare autoimmune disorder. This time, IVIG treatment failed to help. In March 2020, just as the COVID-19 pandemic began, I had to leave my teaching job.
I continued working part-time as a freelance tutor and therapist until October 2022, when complications from a second round of IVIG led to a stroke. I lost vision in one eye for months and had weakness in my right leg and hand. That marked the beginning of another two years of rehabilitation.
I often wish I could just wake up one day and see clearly again, or walk normally. But the reality is far from that—most nights end with tears. Still, I push myself to exercise until my muscles are exhausted, because I don’t have any other choice but to keep going.
What I miss most is waking up with a sense of purpose—the work, the meetings, and being with the students. The laughter, the noise, the feeling of being needed.
If I could start all over again, I would care for my younger self with more love—providing better nutrition, proper rest, and gentler care. But we don’t get to rewind. We just try to soften the path ahead.
Grieving What Could Have Been
In February 2025, I underwent a third IVIG treatment. This time, the reaction was severe. On the fourth day, treatment was halted. My doctors advised me to discontinue further IVIG altogether. The prognosis: within a year, I may lose most of my mobility and potentially become bedbound.
I felt overwhelmed with anger and shock—the words "one year left" echoed in my mind like a death sentence I couldn’t silence.
One of the hardest parts of this journey is grieving the future I had envisioned—the one I fought so hard to build. Though I’ve been offered a place in a nursing facility, I’ve chosen to remain in my own home for as long as I can. My caseworker has arranged for meal deliveries and transport to medical appointments to help me hold onto some independence.
Even small freedoms have slipped away. A simple task like walking to the toilet feels like a major challenge, draining all my energy and strength. Putting on clothes or shoes feels like climbing ten flights of stairs. Every small action takes an overwhelming amount of effort.
I know what’s ahead. But I also know the importance of giving myself space to grieve—to feel the anger, sadness, and loss of my health, my career, and the life I imagined. Only through that process can acceptance begin to take shape.
Strength looks different now. A good day might mean managing to sleep four hours straight without waking up in pain, or having just enough energy to enjoy a meal out with friends—before crashing into bed for the rest of the day, waiting for my muscles to recharge by tomorrow.
And sometimes, it’s just about brushing my teeth. Just that. I’m grateful for the simple ability to wake up and get out of bed each morning. My greatest fear is that one day, I won’t be able to move at all.
This is not the life I planned. But it is the life I am living—with strength, honesty, and as much dignity as I can carry forward.