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Arthritis and young people [guest article]

A profile picture of Lynne Woolley
Senior UK Lead for Young People and Families Service at Versus Arthritis
12 October 2021

Ten million people of all ages in the UK have arthritis. It is our biggest cause of disability. Yet arthritis is shrugged off by society because it’s invisible, has fluctuating symptoms and is wrongly associated with ageing.  In fact, an arthritis diagnosis can come at any age, even childhood, and can profoundly affect your life.  

I work for the UK’s largest arthritis charity, Versus Arthritis. This World Arthritis Day (12 October) we want people to better understand arthritis, and for people with arthritis and their families to know we’re here for them.

Arthritis is not an ‘older person’s condition’

For millions of people arthritis is devastating, with 8 in 10 experiencing pain every day. The pain and fatigue steal your independence, and your ability to work, study, travel or socialise. They also have an impact on relationships. Many people are having a particularly tough time at the moment due to long waits for diagnosis, treatment or support.

Living with arthritis can be particularly difficult for young people. They face the stigma and misconception of having an ‘older person’s’ condition.

In fact, two thirds of people with arthritis and musculoskeletal conditions in the UK are under the age of 65.  Nearly three million are under 35. 

There are various types of arthritis. Osteoarthritis affects around 8.75 million people in the UK. Rheumatoid arthritis affects around 430,000 people. And juvenile idiopathic arthritis around 12,000 young people in the UK.

What is juvenile idiopathic arthritis?

Juvenile idiopathic arthritis (JIA) is the name for inflammatory arthritis that first occurs before someone turns 16. It happens when your immune system creates inflammation in your joints when it doesn’t need to, causing stiffness and pain. It also causes severe tiredness that doesn’t get better with sleep or rest, known as fatigue.

JIA is slightly more common in girls. It most commonly starts in pre-school age children or teenagers. There are different types of JIA and symptoms vary between the different types.

It’s estimated that around 12,000 young people in the UK have JIA, but it’s still not understood what causes the condition.

What’s it like having arthritis when you’re young?

Being in pain and having a chronic health condition like arthritis can impact your education, career, social life, wellbeing and relationships. It can also affect your ability to enjoy rites of passage such as travelling or going to festivals. Many young people living with arthritis tell us they feel isolated, frustrated and a burden on others. But support is available, and connecting with peers and charities like Versus Arthritis who ‘get it’ can make all the difference and help you feel optimistic about the future.

There is very good medication to treat arthritis in young people, and it’s important to try to bring the condition under control to prevent long-term damage to joints. However, these are powerful drugs that can cause unpleasant side effects for young people and impact on their lives.

Amy’s story

Amy is 27, lives in Scotland and has JIA. Her symptoms started around the age of four and she was diagnosed with JIA aged seven. 

Amy says: “I missed out on lots of social activities when I was growing up. Sports days and PE weren’t possible for me. My diagnosis actually gave my parents more questions than answers. They didn’t know anyone young with arthritis and back then the internet wasn’t so accessible, so they felt isolated and apprehensive about how to give me a normal life.  

“These days my arthritis is generally well managed through medication, but I still struggle with day-to-day activities that really add up – bending down, getting out of the shower or driving for long periods of time. I also experience strong side effects from my meds and feel nauseous and tired. The fatigue is worse than the pain sometimes.

“I have big FOMO [fear of missing out] so I don’t turn down opportunities to go out. But I pay for it afterwards, and I need to be much more organised and forward plan more than my friends. They like to be spontaneous but I’ll need to plan in a nap or extra time to get ready if I’m feeling sore, and I need to know venues before we go so I can get a seat or plan transport between places. My friends can wing it but for me it’s not possible.

“They’re generally understanding but one time we went out dancing, I was happy sitting it out watching and they just kept telling me to get up and dance. It put me in a bad mood and spoiled the night because they just didn’t get that I was in pain.” 

How to get help and get involved

The last two years have shown us the power of empathy and looking out for each other. You can support our campaign Impossible to Ignore and ensure nobody waiting for treatment is left alone with the pain and isolation of arthritis. Talk to someone you know who’s affected, ask them how they’re doing; if you have arthritis yourself, know that you are not alone and we are here whenever you need us.

While arthritis has lots of challenges, there are positive steps you can take to help yourself feel better, whatever your age.

For information and support, to connect with others living with arthritis and to join the campaign visit www.versusarthritis.org or call the charity’s helpline 0800 5200 520.

A profile picture of Lynne Woolley
Lynne Woolley
Senior UK Lead for Young People and Families Service at Versus Arthritis

    • Versus Arthritis. State of musculoskeletal health 2019. versusarthritis.org, published 2019

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