Pain is part of her everyday life. But at 25, she’s fighting to do more than just ‘trying to survive’
Nay Chi’s multiple chronic conditions have affected her studies, work, relationships at home and the kinds of daily decisions many other Singaporeans may take for granted. Her story is told in On The Red Dot.
Nay Chi Khaing Zaw entering the train with the aid of a walking stick.
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SINGAPORE: In the morning on the day Nay Chi Khaing Zaw was to sell her art at a market, she was in agony.
In the cab, before she reached the venue, her body began to shut down. As she turned pale, and her eyes rolled, a CNA producer asked anxiously: “Nay, are you okay?”
“I had a seizure,” the 25-year-old said later. “(It) happens from time to time.”
For her, such disruptions to her day are part of living with chronic pain. A flare-up can strike without warning and force her to decide whether to stop or push through the pain.
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That morning, turning back would have meant losing the chance to recoup the S$60 rental fee for her booth through sales, so she pressed on.
Nay Chi lives with lupus, fibromyalgia, hemiplegic migraine, hypermobility and gastrointestinal issues. They can cause severe joint and muscle pain, heighten her pain sensitivity and produce stroke-like symptoms that affect her mobility.
Or, in her words, the pain is “like lava flowing through the gaps” in her joints and like intense muscle cramps.
When it becomes overwhelming, it can trigger seizures that typically last a few minutes, leave her fatigued and affect her short-term memory. Without pain medication, she said, she can experience up to six or seven seizures a day.
Her experience of pain is not an isolated case. About one in 12 people in Singapore live with chronic pain, with women more likely to be affected than men.
Whether their pain is constant or flares up unpredictably, its effects reach into daily routines, livelihoods and relationships.
Each day may bring difficult choices: Rest or keep going, ask for help or manage alone, depending on how much strain they think their bodies can bear.
Much of their pain is invisible. So too is the burden of managing it, from the effort required to control their symptoms to the struggle to be believed.
Nay Chi is one of three young Singaporeans featured in On The Red Dot’s I Am Living With Pain, a series exploring how chronic pain affects various aspects of their lives and how they try to plot a future beyond their diagnoses.
WATCH: Too sick for a nine-to-five job — How I survive with chronic pain (33:00)
TOO SICK TO STUDY OR WORK NINE TO FIVE
For Nay Chi, sometimes even having a shower, let alone venturing out of doors, can drain her energy.
Going out also requires planning. She packs painkillers, therapeutic putty for her joints, bottles of liquid formula for days when she cannot tolerate solid food — and sunglasses because bright light, along with strong smells and loud sounds, can trigger migraines.
She avoids the sun “as much as possible” also because of her lupus; exposure can cause a rash and her joints to swell.
Then there is the pain when she walks. “Stairs!” she groaned when she had to walk up to her rented second-storey art studio with the cane she uses every day.
Given these challenges, she meets her friends in person “once every six to eight months” or longer. Sometimes she must cancel her plans at short notice, including once when a migraine left her unable to move half her body.
“I feel horrible about cancelling these kinds of appointments,” she said.
Beyond complicating daily routines, chronic pain has upended the life she once imagined for herself.
She had studied nursing at Ngee Ann Polytechnic’s School of Health Sciences. It was “a very joyful time” because she loved what she was learning and how she could see patients’ lives improve with small changes.
But as her pain intensified, she could no longer concentrate on her studies. Her limbs were also not strong enough to transfer patients, a basic requirement in nursing. She eventually dropped out.
Full-time work proved just as difficult to sustain. When she found a job teaching art, she tried to take on more shifts and responsibilities, fearing to show even “a little bit of weakness” lest she get laid off.
To keep going, she would drink four cups of coffee, sometimes in place of meals. Within weeks, her seizures, fainting episodes and worsening gastrointestinal symptoms landed her in hospital.
When her employer asked when she could resume teaching, she had no answer. “The issue is that my condition is a chronic condition,” she told On The Red Dot. “It’s never going to get better.”
The experience convinced her that she could not hold down a full-time job. “There are days when I grow to resent my body for not being able to tolerate (working) nine to five,” she said.
Because I do want to be like everyone else … to earn a liveable wage.”
While freelancing gives her more control over her schedule, health problems still get in her way.
Although she wants to take part in more art markets, she must consider the outdoor heat and the demands of transporting and setting up a booth. “Unfortunately, I (often) don’t have the physical strength nor the stamina,” she said.
FACING MISDIAGNOSIS, PUBLIC MISPERCEPTIONS
Even before Nay Chi had to confront the effects of chronic pain, there was the struggle to get correct diagnoses. As her conditions were complex, medical professionals did not always recognise her symptoms.
Her hemiplegic migraine was especially difficult to diagnose. It began in 2016, with flashes of colour followed by pain so excruciating she could not move, speak or think.
The symptoms resembled a stroke, so polyclinic doctors would refer her to the accident and emergency department. When scans indicated nothing unusual, she would be discharged.
“They thought I was just seeking drugs,” she said. “Then the cycle would repeat … every few weeks.”
Things changed only after she sought a second opinion from the Headache Society of Singapore. A doctor reviewed her medication and wrote a letter explaining the severity of her migraines.
When Nay Chi later presented it on admission to hospital, medical staff took her condition “way more seriously”. Her condition was diagnosed after eight years, in 2024.
When she was at school, meanwhile, people around her thought she was faking her pain or trying to “chao keng” (avoid responsibilities), even though she enjoyed studying.
“Because there was no explanation as to why I was going through this, people would be like, ‘Nothing is real,’” she said.
When she commutes, some children will stare at her — a young person using a cane — while some older folks “roll their eyes”. She used to ask for a seat on the train but eventually stopped because of the “dirty looks”.
“People are less willing to give up the priority seat when you don’t look the part,” she said.
Her illnesses also strained her relationship with her parents. Once a self-described “model child” who did well in school and rarely caused trouble, she started falling sick by Secondary 3.
Her parents “got so irritated” at how often she was unwell that she had to write her own sick notes, she said.
They supported her in practical ways, for example in her medical expenses and household chores. She felt emotionally alone, however, as they struggled to accept the extent of her disabilities, including her need for a wheelchair.
Arguments about her health made her reluctant to disclose incidents such as collapsing outside, vomiting by the roadside or getting hurt, unless she needed someone to take her home.
Still, she does not blame them, knowing that they have “their own struggles”.
Over time, she has become less concerned about how her symptoms appear to others. On the day she was at the art market, she had another seizure at her booth and simply resumed painting once it passed.
“Initially, I was (conscious of) how I … presented (myself),” she said. “Now I’m just like, ‘I don’t care.’”
BUILDING A FUTURE ON HER TERMS
Nay Chi’s priority now is to “be financially stable — find a job, earn money and be financially independent from (her) family”.
She has moved into rented accommodation with a friend. Her parents are covering her rent for the first six months, then she must be able to afford her share or else return home.
She estimated that she would need to earn at least S$3,200 a month, up from “zero”.
As an only child, she had worried about how she would cope when her parents are no longer around. Moving out, she said, would let her learn to manage her health and daily needs on her own.
Her parents, meanwhile, worried about who would see to her medication and other tasks. “Obviously me,” she said wryly. She understood their concerns but was chafed because she was rarely allowed to “try in the first place”.
Nonetheless, she acknowledged that independent living carried risks. A seizure leading to a fall could leave her injured, so she programmed her watch to alert her emergency contacts and call an ambulance in that event.
With her move, she has also reorganised her life according to what her body can manage. For example, she relocated her art studio to her new place, reducing the need to commute and walk.
She is adapting her art sales too. After struggling at one market, she brought fewer items and used a trolley for her next setup, where she raised the price of her services.
She plans to set up these booths only once a month and is setting up an online shop selling her products from home.
Nay Chi is also considering offering private art lessons to help cover her rent and save up for a trip to the United States, to meet her Mexican American fiance, Jesus Yovanni.
They met in the online chat space, Discord, and have been in an online relationship for two years. They have been engaged for about four months.
She is concerned about the 24-hour flight time because of the risk of blood pooling in her legs. But she remains “excited” about finally meeting him in person.
The things she yearns for are not unlike what many other young people envisage in life. “I want to eat nice food. I want to get married. I want to travel,” she said wistfully.
There are times when “trying to survive” the present makes the future seem out of reach for her. Even so, she is working towards building one.
“I’ve come to accept that my pain and conditions may never fully go away,” she said. “But I don’t want that to stop me from embracing life and being financially independent.”
Watch this story in the I Am Living With Pain series here. The programme, On The Red Dot, airs on Channel 5 on Fridays at 9.30pm.
Source: CNA/dp
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