Serene Mai
Singapore
My journey with chronic illness began in 1994 with a diagnosis of systemic lupus erythematosus. Years of immune attacks on multiple organs, hospitalizations, and treatments shaped most of my childhood. After over two decades of living with lupus and chronic kidney disease, I was given the dire diagnosis of kidney failure during the COVID-19 pandemic. Dialysis sustained my life until I underwent a paired exchange kidney transplantation.
Living with kidney disease meant navigating uncertainty. Planning for a family required careful consideration. At the peak of the pandemic, I had to balance dialysis and transplant preparations with moving to a new home and new school, while adapting to dynamic changes in my healthcare career.
While I juggled the roles of mother, employee, and patient, I struggled with the physical effects of kidney failure, dietary restrictions, and disrupted routines. Beyond the physical toll were deep emotional hurdles,the inability to conceive again, the overwhelming burden of multiple life changes at once, and anxiety about what the future held.
My journey has been a decades-long process of managing a complex and evolving disease — a roller-coaster ride of flares, remissions, harsh treatments, and surgeries. This experience taught me that chronic illness requires ongoing vigilance, close partnership with healthcare professionals, and extraordinary resilience.
Even after my transplant, the journey continues with lifelong medication, follow-up care, and infection risks. However, my suffering was not in vain,it gave me newfound motivation to transform pain into purpose.
Today, my lived experience drives both my advocacy and professional work in healthcare. It has deepened my empathy and strengthened my belief that healthcare systems should be designed not just for patients, but with them, ensuring care is truly empathetic, inclusive, and patient-centred.