What living with rheumatoid arthritis as a youth is like
A 26-year-old shares how he was diagnosed with rheumatoid arthritis and what it’s like to live with it.
Experiencing wrist pains after sitting for an exam is undoubtedly a common concern among students, particularly those who write extensively.
James (not his real name), 26, suffered from those pains when he was a student sitting for his A-Levels back in Junior College, but did not think much of it.
“I did arts, so I studied history, literature, economics and math. I remember that was the first time I began experiencing such pains because when you write five to six pages per essay in exams, there’s a lot of pain,” he shares. He also adds that he was an avid gamer and believed that playing video games contributed to the development of his joint pains.
Little did James know that the wrist pains, which he regularly experienced for over 10 months, were one of the first symptoms of his illness. It took him 12 months and a misdiagnosis to discover that he had rheumatoid arthritis (RA) – an autoimmune disorder that affects the immune system and causes joint disruption.
“I think the first sign I realised it was rheumatoid arthritis, or it could be, is that the pain began jumping from wrist to wrist,” he added.
As I sit down with James over a cup of coffee at Paya Lebar, he shares with me what it’s like to live with rheumatoid arthritis and how it affects his everyday life.
Getting diagnosed with rheumatoid arthritis
James’ journey to finding a diagnosis was nothing short of a whirlwind. When he sought medical attention from a doctor to determine the cause of his wrist aches, he was diagnosed with Kienbock’s disease – only to discover later on that it turned out to be a misdiagnosis.
“Kienbock’s disease is the destruction of the small bones in the wrist, particularly the lunate. Generally, it comes across because you’re doing lots of physical activity.
“Back then, I was doing a lot of kayaking, push-ups, and all kinds of activities that can impact your wrist. So, that was kind of a provisional diagnosis,” he explains.
During his National Service (NS) days, when he was a security trooper, James’ symptoms worsened and caused him to have trouble sleeping. While he was in camp, he experienced an episode known as a flare, which left him suffering from severe pain.
Recalling the earlier days of his NS, he shares: “When my shift was mounted, I remember I had this really bad flare. I couldn’t sleep because I was in a lot of pain. I think I was crying.”
After making his court officer duty aware of the pain he was experiencing, he was taken to the military hospital, where the doctor prescribed him a series of pain pills. These pills, however, did nothing to alleviate the pain he experienced.
He was eventually driven to Tan Tock Seng Hospital’s Accident and Emergency (A&E) department, where he was given another round of pain medications before moving on to stronger ones like Tramadol.
Seeing that his wrist pains weren’t just a minor issue, James sought advice from his medical officer, who he describes as “thankfully more empathetic”.
“The typical response to someone in the army who says they’re sick is ‘Hey bro, go back to work. You got things to do’. But then he took a closer look [at my hands]. And he said that actually, this looks like RA,” James recalls, whose commanding officer was a rheumatologist and had seen such cases before.
Managing the challenges of living with rheumatoid arthritis
Having rheumatoid arthritis comes with many difficulties. Exercising and even sleeping can prove to be a challenge.
The computer science graduate from a prestigious college in Singapore, who describes himself as someone who was “very high-octane”, used to spend his time reading, exercising and even staying up late to spend time with his friends. In the past, he would sleep three to four hours a night, but having rheumatoid arthritis meant these habits needed to change.
“Life becomes different when you have different considerations,” he shares.
Besides sleep, James began to focus more on his lifestyle and became more attentive to his body’s needs with regard to nutrition, sun exposure and social activities. He speaks of the experience as having a second person to look after and that he could no longer “live like a reckless young person”.
“It’s almost like having a second person to look after, which is the sick person within you. And I think it tightens that feedback loop between you and your body,” he adds.
When asked about what he thought was the most challenging issue he had to overcome, he responded by highlighting the difficulties of travelling with rheumatoid arthritis. In addition to keeping track of his medication schedule, transporting medications abroad can be a hassle.
“When you bring medications across the border, it can be pretty tricky and stressful. If you lose it, what happens? Does it mean that you will have to find a doctor overseas?” he points out.
In addition, he is also concerned about getting the support he needs from both his loved ones and his doctor.
“What happens if I revert to the state where I can’t move and can’t leave my bed? I can’t even pick up DoorDash or GrabFood. What am I going to do with that?” he says.
Despite his fears, James visited Sweden in January 2019 on an exchange programme – which he initially shielded away from due to his concerns and fears about travelling abroad.
In the end, it was his doctor who advised and “counselled” him to pursue it.
“My doctor advised: ‘Go live life. Don’t be so scared. If it happens, you deal with it. But if it doesn’t, then don’t let the fear in your mind crowd out the opportunities’,” James explained, adding that the advice helped him reframe some of his thoughts surrounding his illness.
“I think finding and working with a doctor that you really trust and have a rapport with is important because they’re not just a dispensary for medication. They’re also [your] support.”
He is also grateful for the support he receives from his family, who are always willing to go the extra mile to help him. After losing his medication in New Haven, his family helped him transport new doses across the world by flight.
“[The medication] was also stored in ice. And it’s not cheap to ship my medication from Singapore to the USA.
“I think the way my family packaged that and sent it to me was really touching.”
A change in outlook after living with rheumatoid arthritis
It was not only a physical change that James had to go through but an emotional and mindset shift. To cope with his arthritis, he began writing poetry and became more empathetic towards others.
He says: “I think I’m a lot more empathetic now. Before that, I used to be more impatient with others.”
Having rheumatoid arthritis also changed his perspective, making him realise that some illnesses – like arthritis – are invisible.
“Just because you can’t see it doesn’t mean it’s not there. So remember to be kind to people, and believe people when they say something. Then, educate yourself on how to help people and ask them how they want help,” James explains.
He also began to see his circumstances as an opportunity to receive love and support from the people around him. As with many Asian households, his family had difficulty expressing their love in a tangible way that could be seen or recognised.
However, his illness has allowed him to appreciate and understand the depth of his family’s affection.
He shares: “I think my illness has given my family a lot of opportunities to show that they really care about me, such as my welfare and my happiness.”
The National Arthritis Foundation (NAF) is holding a cycling fundraiser, Ride For Hope, from Sep 20 to Oct 17 to raise awareness of arthritis and amplify the unspoken words of those who suffer in silence with the disease. Sign up here now.