SINGAPORE: On some days, Abrial Pang might be racked with pain: seven or eight on a 10-point scale. But even then, he would not dare take a reserved seat on the train, let alone ask for one.
Because if he did, he would be “so worried” someone would “say something”. And if he were to explain, “they’ll never understand what I’m talking about”, said the 31-year-old.
“Even if I were to wear the (May I have a seat please) lanyard, I’m quite sceptical (as to whether) people would give up their seat for me.”
Apart from a limp if his leg is hurting badly, he looks fine. Lean and muscular, in fact. “Everybody just thinks that I’m fit and I’m healthy,” he said. “But I’m not.”
One incident sticks in her mind as to why that is so: She was boarding a bus when an older woman started pushing her way to the front.
Lim, who has a condition that, among other things, makes her unsteady on her feet, told the woman to stop pushing. An argument ensued, with the older commuter stating, “Young people don’t get sick!”
Not only commuters but also some patients in healthcare settings are surprised to see young adults suffering from chronic pain, as Pang found out when he once was waiting for his turn to see his rheumatologist.
An older woman asked him if he was waiting for a grandparent, he recounted. “I said: ‘No, I’m here to see the doctor.’ She smiled in disbelief … (and said): ‘You’re so young. What illness do you have?’”
WATCH: I’m a young adult with an autoimmune disease. Here’s what folks don’t get about chronic pain (15:06)
What Pang, Shanti and Lim have are autoimmune diseases, in which normal cells are attacked by the body’s immune system. According to research, there are about 80 to 100 known autoimmune diseases.
The challenges facing sufferers are far more, and CNA Insider speaks to young adults with different autoimmune conditions about navigating work, relationships and the future.
CHALLENGES AT WORK, SCHOOL
Pang first experienced lower back pain in 2014, which he dismissed as the result of pushing himself too hard in the gym.
Looking back, he realises he may have experienced “flare-ups” — symptoms such as back stiffness, pain of varying intensities and fatigue — between 2014 and 2015. But it was not until 2017, at age 25, that he was diagnosed with ankylosing spondylitis.
What are autoimmune diseases?
Instead of protecting the body, the immune system can mistakenly attack any body part, including organs, joints and skin. Common autoimmune diseases in Singapore include rheumatoid arthritis and lupus.
There are also rare conditions such as vasculitis, which causes inflammation of the blood vessels and is what Sherry Soon, the founder of support group Autoimmune Diseases Singapore, has.
The group has almost 400 members, of which 90 per cent are women as they are likelier than men to develop autoimmune conditions.
Different autoimmune diseases affect sufferers differently, though fatigue and aches are common. Diagnosis and treatment also vary between conditions, but all autoimmune diseases are chronic and lifelong.
“Many of us don’t reach that stage of remission, and we just have to cope with all the different symptoms on a day-to-day basis,” Soon said. “There’s also no cure. … What the medications do is to suppress the immune system and stop the inflammation.”
Many sufferers often regard their conditions as “invisible”. “We often joke that … if there are some visible signs of our autoimmune disease,” Soon said, “people will be able to understand more.”
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This autoimmune disease leads to inflammation mainly in the spine and sacroiliac joints, which connect the spine to the pelvic bones, according to rheumatologist Koh Li Wearn, a senior consultant at Tan Tock Seng Hospital.
Between 0.2 and 0.5 per cent of the world’s population has it, and it affects more males. Patients typically develop this condition in their 20s or 30s.
“My first question … was, ‘Can it be cured?’” Pang recalled. “When (the doctor) said that it can’t, … I felt really down.”
He still exercises regularly, to prevent his condition from deteriorating, but must take anti-inflammatory drugs to deal with his flare-ups, which happen about once a month. Even with the painkillers then, he would limp.
Nevertheless, Pang made a career switch and became an insurance agent two years ago because he could “relate to people who have issues (that) are a lot more severe (than his)”.
Zoom meetings during the initial course of the pandemic helped him connect with teammates and clients. But as work from home ceased, Pang’s colleagues started noticing his absence.
This time, however, his manager knew about his condition and helped him keep it under wraps initially.
Pang even gave in to peer pressure and switched his backpack for a briefcase after his colleagues had dropped hints about carrying the latter to “suit the image” of an insurance agent.
But carrying the full load on one side of his body affected his condition. He has since reverted to using a backpack.
She took six years, instead of three, to finish her diploma course because of hospitalisations, visits to the doctor, medical tests and a liver transplant in 2018, which all affected her studies.
She also worked with three batches of classmates over the years. “It was … annoying to go back to school and start, stop, start,” she said.
VIEWERS SHARE THEIR EXPERIENCES
CNA Insider’s video of young adults with autoimmune diseases has resonated with viewers, racking up more than 370,000 views on YouTube since last week.
It has also drawn close to 700 comments, including from people sharing their own experiences of living with an invisible medical condition. For many of them, there is continual pain — and the difficulty of dealing with dismissive attitudes.
“Who enjoys taking up to three weeks of (sick leave) … only to come back to a mountain of outstanding work and colleagues giving you an unhappy face because they had to cover (for) you?” wrote Tobias.
“A few of them even sarcastically asked if I’d enjoyed the long break at home. No! I didn’t enjoy it as I was constantly in pain, and nothing gets properly done!
Flying to San Francisco on business trips was the norm for her when the self-professed workaholic was in sales at a technology start-up. She was working out “almost every day”, went out drinking and living a 20-something kind of life.
Then in 2021, she developed a persistently high fever. After months of tests, she was diagnosed with small fibre neuropathy, an autoimmune disease that affects the nerves. It often manifests itself as tingling pain across her body.
It was not long before she was diagnosed with another chronic condition: fibromyalgia, which causes pain, fatigue and cognitive issues sometimes known as “fibro fog”.
“I used to cook a lot, but now I forget what the next step is,” she told CNA Insider. “I forget to brush (my) teeth. I forget whether I shampooed my hair when I bathed.”
Unlike people with type 2 diabetes, for whom dietary modification and regular exercise may help with glucose control and even lead to remission, people with type 1 diabetes require lifelong insulin replacement, said Singapore General Hospital (SGH) senior consultant in endocrinology Daphne Gardner.
With type 1 diabetes, the immune system destroys insulin-producing cells in the pancreas. In Singapore, 8.5 per cent of the population has diabetes, of which less than 5 per cent has type 1.
SGH sees 450 patients with type 1; at least two-thirds of them are under the age of 35.
In Shanti’s case, her insulin is subsidised but not the sensors, which must be replaced every two weeks. She pays close to S$200 per month for them.
Nevertheless, online meetings and asynchronous work, which became the norm during the pandemic, can help an organisation with productivity, said Soon. “It really benefitted some of us, because right now (we) can still contribute.”
Pang’s mother, Koh Beng Choo, is particularly worried about his future — on the domestic front. “Let’s say he gets married down the road and … has his own children,” she said. “Will (the disease be passed) on to his children?”
He knows there is a hereditary risk but considers that the “chances are … quite low”, since none of his immediate family has ankylosing spondylitis.
“There (are) so many other worse things that could happen to someone,” he said. “If my kid (were to have) it, I think he or she should be positive enough to go through it and live life to the fullest.”