“I had never met another child with arthritis” – Felix’s story24 June 2021
Growing up with JIA, Felix often found that people didn’t understand the impact of his condition, and now he's creating a film to raise awareness of arthritis in young people.
“At such a young age, you just accept how it is because you don’t know otherwise.”
When I was diagnosed, the drugs and blood tests started quite quickly, and I began having lots of hospital appointments.
I was given methotrexate on and off for two or three years, it was horrible. It got worse to the point that I absolutely dreaded Fridays, my treatment day.
At first, I was taking it in pill form. One of the side effects was that I had no appetite, and I became worryingly thin. It also wiped me out for about two days.
I then started on injections, but I developed a phobia of needles and had to have therapy when I was 10 to try and overcome this fear.
Another horrible side effect of taking methotrexate was the bad dreams I had. I became scared of going to sleep.
- Read Aimee's story on why it’s important for young people to speak out about side effects of methotrexate.
“I would say that most people at secondary school didn’t understand.”
I liked primary school, although I did miss days for appointments and had to take time off when I was in pain or not feeling well. I actually used to quite enjoy the trips to the hospital because I got to spend time with my mum who was my main carer.
Secondary school was a lot harder, with lots of new people who didn’t know about my condition. The school was very sporty and into rugby, but I couldn’t enjoy sports with arthritis, so I felt like I didn’t really fit in there.
In PE lessons the rugby boys would ask me why I couldn’t take part. When I explained that I had arthritis, they would say things like, ‘That’s a granny’s disease, why do you have that?’
“Arthritis has definitely helped define my personality in a good way.”
Instead of doing the same as most people at my school – sports – I was pushed to be my own person.
I eventually found the drama people, and this is where I made my closest friends. They knew about my condition and were more understanding, although I still don’t think they were aware of the full impact it had. It was difficult with guys in particular because we communicated less with each other.
“I didn’t think my condition was bad enough to go to a support group.”
I didn’t get involved with charity support groups as a kid. I think it was mainly teenage boy stubbornness – in my head. I thought I’d have to hang out with older people, which I didn’t want to do.
I’d never met another child with arthritis until getting involved with Versus Arthritis. Going to the charity events for children and young people is a great place to meet others and find support.
There isn’t much awareness about juvenile arthritis in society, especially when it’s a hidden autoimmune condition like JIA, so without these kinds of events it would be hard to meet people and learn more about your condition through others.
Only looking back now do I understand how bad my arthritis was, and how much it impacted me.
“Through my film, I want to encourage young people with arthritis to meet each other.”
When I was about 11 or 12, I found YouTube and started making my own things. I used to do Lego stop motion films and stuff like that.
I stayed interested in film and after school I went on to do Filmmaking at Bristol UWE.
The idea to create a film with Versus Arthritis all came from seeing a documentary in my second year of uni. The story was about a guy who wanted to be a chef but felt held back due to his arthritis. It was so moving and really touched me, it made me realise that so many young people are probably going through the same thing I did.
But the quality of the video was so poor that it made me want to tell the story myself, so that’s why I’m making my film.
“If I get arthritis again when I’m older, I’ll just have to deal with it.”
I went into remission when I was about 16, but some people never grow out of JIA.
Although it’s completely gone for me now, the condition has had a lasting effect on my immune system. For example, I catch a cold for longer and nights out hit me harder.
I’m always expecting it to come back, but it doesn’t worry me. I’d say I’m a very positive, upbeat, and happy person and I think my condition has pushed me to find what I love doing.
If you or a family member under the age of 25 has arthritis, we run a Young People and Families service that provides information and support and puts on a range of events across the country.
Our service helps young people and children offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.
Find out more about our Young People and Families service.
We’re here whenever you need us
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