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What it's like to be a young person with arthritis

What it's like to be a young person with arthritis

When you think of arthritis you might picture an elderly person, bent over a walking stick, their fingers contorted by the disease of old age. Yet for many people with arthritis, this image belies the reality of the condition.

Arthritis is a general term that describes joint pain and inflammation, and it affects around 10 million people in the UK. There are around 200 different arthritis-related, or musculoskeletal, conditions.

Osteoarthritis is the most common type and causes the smooth coating of the joints - called cartilage - to become damaged, leading to pain, stiffness and disability. This can happen for many reasons, including injury, gradual wear and tear associated with age, and obesity placing excessive strain on weight-bearing joints.

Rheumatoid arthritis, the second most common form, is an autoimmune condition whereby the immune system attacks the lining of the joints and causes them to become inflamed, stiff and painful.

Arthritis in young people

Both forms of arthritis are most commonly diagnosed in people in their late-40s or older, but rheumatoid arthritis and a condition called juvenile idiopathic arthritis can, in fact, affect youngsters and children. Around 12,000 under-16s in the UK have arthritis. For some, symptoms are mild and easily manageable but for others, the disease can have a significant impact on their day-to-day lives.

Carrie Thompson, who's 25, first fell ill when she was 6 years of age and was formally diagnosed with rheumatoid arthritis at the age of 18.

"I started to experience extreme tiredness that didn't go away with a good night's sleep; it was unrelenting," Carrie recalls. "I had pain in my hands and wrists that got increasingly worse. The pain spread all over my body, until I was almost paralysed from the neck down, completely locked up and unable to walk."

When Carrie was eventually diagnosed, the condition had become so bad that the inflammation had begun to affect her lungs, and her parents had to feed and dress her.

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'Hard to come to terms with'

At first, Carrie was relieved at having a diagnosis because it meant there was an explanation for how she'd been feeling and that she could get the treatment she needed. However facing the prospect of a lifetime of chronic illness, she was worried for her future and her long-term health.

Dr Benjamin Ellis, consultant rheumatologist and spokesperson for Arthritis Research UK, explains that teenagers often struggle to accept their arthritis, not least because in their eyes it makes them different from their friends.

"In adolescents, arthritis can strike when their bodies and minds are rapidly changing, which is a difficult enough time without having to contend with painful, swollen joints, and possibly wearing hand splints and using walking aids," he says. "It can be particularly hard for young people to come to terms with having a long-term condition, and having to take regular powerful medicines or injections to control the immune system's attack on their bodies."

Carrie has weekly injections of a medicine called tocilizumab, a biological therapy used to regulate the production of a certain type of protein that, in many people with rheumatoid arthritis, is a primary cause of inflammation, joint damage and fatigue.

"It gave me the ability to walk again," she says. "I still have some really bad days and flare-ups, and I often get infections because my immune system is suppressed, but the medication made me functional again."

Reality of life

Despite doctors warning her that she may not walk properly or go to university, Carrie defied both predictions. With hard work and determination, she won a scholarship to music college and fulfilled her goal of being able to walk through the doors on her first day.

She takes the bad days with the good and still struggles with pain, but particularly crippling at times is the extreme fatigue. Worse still, Carrie says, is that many people think of the fatigue associated with arthritis as nothing more than a bit of tiredness.

"Everyone gets tired and rundown but when you're chronically ill, tiredness takes a different form," she explains. "It can be paralysing. Your whole body feels heavy and you wonder how you can bathe, dress and feed yourself. Some days you just can't."

Some people also wrongly assume that when Carrie takes time off, it's an opportunity to relax and watch TV. "My sick days aren't fun; they're spent alone, barely able to move," she says. "I have such brain fog and I'm in such pain that I cannot concentrate, and I'm normally dosed up on painkillers and medications that make you feel very sick and unable to function properly."

In spite of this, Carrie shares the same interests as many young women; she loves makeup and fashion – and that's another misconception she's keen to rebut.

She comments: “Just because I'm chronically ill doesn't mean I give up on my appearance. Dressing up and putting a full face of make-up on makes me feel better. But being all 'glammed up' doesn't mean I'm not still suffering with severe pain and fatigue."

Tips for managing arthritis

Despite the impact of her arthritis, Carrie says that having a strong support network, keeping a diary to stay on track with hospital appointments, tests and medication, and taking time out when things become too tough are just some of the strategies that help her to manage day to day.

Maintaining a healthy lifestyle is also important, with regular exercise particularly helpful in combatting joint pain and fatigue, Ellis notes. He adds that talking to people who understand can be valuable.

"Healthcare teams can offer advice and support, and many people find it helpful to be in touch with other people like them who can share their experiences, the challenges they have faced and the approaches that have helped them," he says.

However, arthritis affects approximately one child in a thousand, so youngsters are unlikely to meet people their own age with a similar condition by chance. The Young People and Families Service run by Arthritis Care, a part of Arthritis Research UK, offers a solution.

"The service provides opportunities to meet someone with a similar experience through a range of activities including family events, residential weekends and workshops," Ellis explains. "This aims to reduce isolation, supporting people to increase their resilience and develop a more positive outlook for the future. It also helps young people and their families achieve a greater understanding of the condition and develop a support network."

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