“I think society believes that arthritis is just a disease for older people, which is totally wrong”18 March 2019
Juvenile idiopathic arthritis (JIA) is a form of arthritis that affects children under the age of 16, affecting 1 in 1,000 children in the UK.
18 March is World Young Rheumatic Diseases day - or WORD day for short. The aim of the day is to raise awareness that arthritis affects young people, to ultimately improve early diagnosis of the condition.
To highlight the impact arthritis can have on children and young people, we spoke to three young women about their experiences of living with JIA and what they wish people knew about the condition.
“I think society believes that arthritis is a disease for older people, which is totally wrong.”
Caitlyn, 15 years old, was diagnosed with juvenile idiopathic rheumatoid when she was 7.
“When I was diagnosed, I started having weekly injections and blood tests meaning I missed a lot of time at school and time with friends.
“My favourite hobby is drawing which became very difficult and painful. It became a lot harder to enjoy school and life in general as each moment was overtaken with pain and stiffness.
“Since being diagnosed, I've faced many challenges. Not only with my physical health, but mental health, too. It's hard to accept that I'll never grow out of arthritis.
“I think society believes that arthritis is a disease for older people, which is totally wrong.
“I've received so much support from my family and friends, my parents especially. They're always taking time out of their day to take me to the hospital. My dad even does my injection (still!) and without him I would be in a lot more pain.
“It also helps that my school is aware of my arthritis. They give me all the support I need, giving me any school work I missed due to appointments.”
“As I’ve gotten older I’ve become more confident in talking about my condition and the adjustments I need to make in life.”
Bansi, is 28 and was diagnosed with JIA as a child which has since developed into mixed connective tissue disease, scoliosis and hypermobility.
“I feel like the disease has impacted my life in different ways through the different milestones in my life.
“My school were great once my parents and occupational therapist had spoken to them. It was the really little things that made such a difference like trying to keep classes in the same building and on the ground floor and providing me with scribes and rest breaks for my exams.
“Once I graduated from university I started work as a pharmacist where I faced a new set of challenges. All of a sudden, I was on my feet all day, my stress levels increased, and I had people relying on me.
“All of this had a massive impact on my health, and it was as if I was in a permanent flare up. After two years I decided I needed to rethink my career within the pharmacy. I left that job and spent a year looking after myself and building my strength back up.
“I’ve now found a great pharmacy job that is part-time. There’s a mixture of movement and sitting down and I have a lot more flexibility during flare ups.”
“For me, the biggest challenge has been talking to friends and family about my condition and how it affects me.
“I think it’s still quite an unknown condition. Even now if I tell anyone that I have arthritis most people will either be shocked or tell me that they didn’t know it was possible to get it so young.
“As I’ve gotten older, I’ve become more confident in talking about my condition.
“I’ve found the more I talk about things, the more understanding my friends are at changing plans to make sure that I am able to come. But they also understand that sometimes I need to cancel plans.
“If I was speaking to someone else with JIA, I’d tell them that you’d be surprised with how adaptable you can be. You’ll find your own ways to do everything from going out with friends to studying.”
“Try and find the positives in your situation”
Rowena, 17, was diagnosed with juvenile psoriatic arthritis at 12 years old.
“I was diagnosed when my left knee flared up after an injury I got in a football tournament.
“After being diagnosed, the arthritis spread to my other knee, spine, hip, and now my thumbs.
“It was especially tricky to move about at school due to it being split between two buildings with a steep hill in-between.
“I began to fall behind in some of the sports I had previously loved, so resorted to trying out coaching instead. Although I loved football, the coaching has been a new and unique opportunity and I wouldn’t change anything.
“My advice for someone else with JIA is to try and find the positives in your situation.
“Try and get involved with your hospital or charities like Versus Arthritis. You get to meet loads of new people and experience things you wouldn’t have done otherwise.
“Smaller things can also make a difference, like buying a nice drink or something to eat when you’re on your way to or from hospital. The appointments can also be really interesting if you like medicine or biology!”
If you or a family member has JIA, we run a Young People and Families service that works together with young people living with arthritis and their families to provide information and social and emotional support. We hold lots of events for young people with arthritis.
The service helps families to have a better understanding of living well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.