Arthritis is often thought of as an inevitable part of the ageing process. However, for those diagnosed as children, society’s trivialisation of what is often a hidden disability can be the hardest part.
One of the most common misconceptions about arthritis is that it only affects elderly people. However, around 12,000 children in the UK under the age of 16 have juvenile idiopathic arthritis (JIA).
Chloe Scarlett was just three-years- old when she was diagnosed with JIA, after a fall from her cot caused a swollen knee that wouldn’t go away.
“Because I’ve always had JIA, I’ve got no perspective on what my life would have been like without it,” explains Chloe.
“At school, I would have to persuade my P.E teachers that taking part wasn’t going to cause irreparable harm. The lack of understanding and support at school was a limiting factor for me.
“I was treated as if I needed to be in a bubble, which isn’t the best way to treat a child.”
Symptoms of JIA include unexplained weight loss, poor sleeping patterns, swollen joints and glands, irritability and also a decreased level of development: this could be asking to be carried, delayed or changed movement, regression of potty or toilet use.
The road to diagnosis can be long, and it took almost a year for Chloe to receive hers, following an initial diagnosis of lupus.
Treatment takes many forms, from painkillers and inflammation tablets, to disease modifying anti-rheumatic drugs (DMARDs), which inhibit the overactive immune system, ease pain and stiffness, and prevent damage within the joints.
Though symptoms can be relieved with medication, JIA often affects people into adulthood.
“In my late twenties I had to decide to stop working full-time, which was really difficult,” recalls Chloe. “I have systemic JIA so it affects all parts of me: I get fatigue, have muscular problems; it affects a lot more than just joints, which a lot of people don’t understand.”
One of the biggest obstacles can be the stigma that comes with having a hidden disability, and the lack of awareness from the general public.
“I often use a crutch,” adds Chloe.
“I can’t count how many times people have asked me what injury I have, which is difficult because nobody would ever ask an old person why they’re walking with a walking stick.
“Just because people can’t see my arthritis, doesn’t mean it’s not there, and just because I look relatively well, it doesn’t mean that I am.”
Despite the challenges, Chloe hasn’t let the condition hold her back.
“Never say no – just find a different way to do things,” she advises. “There’s always a way around an obstacle; there are always alterations that you can make to ensure you don’t miss out on things.”