WILLIAM LYNCH, aged 11, suffers with chronic pain and inflammation in his hips, legs, knees, fingers, and feet. At school, he often has to sit out when his friends play football, or other sports. “It can make me feel left out, because it really hurts to play football,” he says.
William is one of about 12,000 young people in the UK with juvenile idiopathic arthritis (JIA).“His sleep can be greatly disturbed as well; the pain wakes him up. He is really good, and he’s really resilient to pain, but when you don’t sleep you don’t have as much power to deal with being uncomfortable,” William’s mother, Sarah Lynch, says.
William has regular physio because his muscles are tight; he eats plenty of fish, dark greens, and cheese, to boost his iron and calcium; he takes daily medication; and has bi-weekly disease-modifying injections to preserve his joints by blocking inflammation. “Sadly, it does cause him to have a compromised immunity; so we had to be very careful at Covid time. . . He was one of the first set of children to have the Covid vaccine,” Mrs Lynch says.
William also has enthesitis, an inflammation where tendons and ligaments attach to the bone, causing a burning type of pain. And William is autistic, which delayed his diagnosis and treatment, as problems with movement and pain were at one stage thought to be sensory.
JIA is an autoimmune form of arthritis, “where the immune system mistakenly attacks healthy joints”, says the consultant rheumatologist Dr Benjamin Ellis, who is senior clinical-policy adviser to the charity Versus Arthritis.
Versus ArthritisWilliam, with other choristers, in the choir stalls at Ripon Cathedral
Arthritis refers to pain, swelling, and stiffness in a joint or joints. It is one of the biggest causes of pain and disability in the UK, affecting more than ten million people of all ages. “Without treatment and support, the chronic pain and fatigue of arthritis can put lives on hold, prevent people living independently, and can stop people from working or going to school,” Dr Ellis says.
“Many people with arthritis also experience depression, anxiety, and fatigue. Partly, this is because of the impact of living with pain and disability, but autoimmune forms of arthritis cause inflammation, which can affect the brain to cause these symptoms, too.”
Sarah Lynch has psoriatic arthritis; “so it is probable that this is the type of arthritis William would have if he was diagnosed as an adult. But, at this stage, they simply put it as JIA, and that covers arthritis throughout children.”
In about half of the children with JIA, “it completely goes away after initial treatment. But the rest will have JIA their whole lives, needing lifelong treatment,” Dr Ellis says.
Mrs Lynch says that, for William, “there are times when it’s in remission, so the arthritis will be very calm . . . and that period of time can be extended as they grow older. We hope he’ll be able to have a time when he doesn’t have it . . . but we just don’t know at this time.”
WHILE William may not always feel well enough to play football, JIA does not stop him being a senior chorister at Ripon Cathedral, where he has been a member of the boys’ choir for almost four years.
William says that he has always loved classical and choral music, but the Lynch family had no previous experience of involvement with the cathedral.
“I saw the lights of the cathedral, and I said to mum, ‘Can I sing there?,” William recalls. His mother was initially apprehensive. “I was concerned that the organ would be too loud for him. As a child, if he went to a disco party, or something similar, he had to have ear defenders on.” But, in the cathedral, “it was unbelievable: it was the complete opposite,” Mrs Lynch says.
“I visibly see him relax when he goes into the cathedral. He’s very uptight — I think some of it is dealing with the school day, with autism, with pain. When we leave, he’s bouncing, literally, out of the building.
“The effect that music has for him is phenomenal. . . It’s on a par with his medication. He becomes alive at the choir: it’s his place. He loves the cathedral; so, during lockdown, when he couldn’t be with his choir, we’d walk around the cathedral. . . As soon as [we] were able to re-access the building, he needed to be there.”
VARIOUS studies have suggested that singing has physical- and mental-health benefits. “Singing is often recognised as something that may be helpful for people with breathing problems, but a 2020 study suggested that group singing could also reduce pain and depression for people with a long-term health condition,” Dr Ellis says.
Versus ArthritisDr Benjamin Ellis
The 2020 paper states: “It is plausible that singing will influence pain as singing increases body relaxation and reduces stress levels. A recent study found that people who practised relaxing, deep, slow breathing patterns had increased pain thresholds and reduced pain sensitivity. Singing, compared with passively listening to music, also activates the body’s own pain-relief function (endorphins) and elevates positive mood.
“Further, singing might influence pain processing through distraction — focusing attention away from pain may reduce the impact of pain and how it interferes with activities of daily living. Finally, singing is a group activity that leads to social cohesion and emotional support, which has been related to pain.”
William puts it like this: “If I sing at Ripon Cathedral, it helps with relaxing my muscles. The sound of the organ under my feet feels really cool: it’s a really nice vibration. At home with the piano, if I hook my feet on the pedals below, I can feel the vibrations from the keys. But the organ is much more powerful.
“At the cathedral, I feel peace with my pain, and I feel very happy.”
“WE DO have that pain relief from his singing,” Mrs Lynch says. She retired from the police force owing to her arthritis, and now works as the cathedral administrator. “I also think he feels he can be himself there.
“In school, he has some very close friends, who understand each other. In other environments, he’s trying to keep up, and, as he’s getting older, the older boys are socialising in a different way, and William struggles sometimes to fit in. . . But, at the cathedral, William’s happy to be him, and that’s remarkable really.”
William says that he would like to see other children who have arthritis “have a go at singing at Ripon Cathedral. Or people who naturally struggle, or people who are quite sad, at any age, to be able to listen to the choir.”
Dr Ellis, who also sings in a choir, says: “Even if joint pain and stiffness have robbed you of the ability to use physical instruments, singing can allow people with arthritis to engage with, explore, and enjoy music.
“William’s moving story demonstrates the joy and meaning that comes from being part of a choir — and the real difference it’s made in terms of living with, and managing, his arthritis.”
For help on managing chronic pain visit Versus Arthritis versusarthritis.org, or ring the charity’s free helpline on 0800 5200 520.
Lifestyle plays a part
THERE are different types of arthritis, each caused by different combinations of genetic and environmental risk factors, the consultant rheumatologist and senior clinical policy adviser to the charity Versus Arthritis, Dr Benjamin Ellis, says. Avoiding smoking reduces the risk of some autoimmune forms of arthritis, as does maintaining a healthy weight and being active.
Osteoarthritis is the most common type of arthritis, occurring when the body can no longer maintain and repair one or more joints. Osteoarthritis most commonly affects people over the age of 45, and is treated with painkillers and exercise, although in some cases people will need joint replacement surgery.
Rheumatoid arthritis, psoriatic arthritis, and juvenile idiopathic arthritis (JIA) are all types of “inflammatory arthritis”: the term used to describe autoimmune conditions where the immune system is out of balance, and mistakenly attacks healthy joints.
“Anyone with unexplained pain or swelling in their joints should seek medical attention, particularly if it comes on quickly, or if people develop stiffness in the joints or spine that lasts more than 30 minutes after waking,” Dr Ellis says.