Megan's story: "You can always find a way to do what you want"

Arthritis doesn't define who I am 

Megan Bennett, 19, from Bristol, was diagnosed with Juvenile Idiopathic Arthritis (JIA) when she was just 20 months old. She’s currently studying musical theatre at LMA in Liverpool where she has adapted her dancing for crutches and a wheelchair because she believes that you can always find a way to do the things you love. 

"Every time I’ve been in dance class, I’m the only one with arthritis. The Arthritis UK dance challenge will be amazing, joining with other people and showing that we can still do physically challenging hobbies.

Arthritis has always been a part of my life. I’m too young to remember but, I’m told, there was no gradual progression. One day, at around 18 months, I was screaming and crying and, when my parents tried to pick me up and console me, I’d scream even more. Mum was terrified.

We saw three or four GPs and they all told mum I had a virus, but Mum felt something else was wrong so we returned and saw a locum GP who immediately sent us to A&E. After two months of testing to rule out everything else, I was diagnosed with Juvenile Idiopathic Arthritis (JIA) at 20 months. 

I’ve always known I have arthritis, I was raised with that knowledge. I remember starting primary school and standing up in front of the class to explain what arthritis was and, again, standing up in front of the whole year in secondary school to do the same. I found people didn’t really know about arthritis in children but they tried to understand and help the best they could. 

Adjustments to join in

I wanted to do baby ballet because both my mum and sister danced, and it was there I realised things were more challenging for me. I also recognised that I needed more help that other children around me, I needed a cup with two handles and was in a pram until I was eight or nine. It wasn’t hard because it was all I’d ever known but there were times it was hard to watch my friends running around at play time and not always being able to join in.

I always wanted to do active things like swimming and dancing and my parents were always fully supportive, making me aware it might be harder or I might do things slightly differently but that it was okay to struggle or find adjustments. They handled it amazingly well, encouraging me without putting on any pressure.

At diagnosis, they put me on methotrexate injections then, as I got older, I moved onto tablets. A few years ago, I went back to injections because I needed a higher dose, I still get nauseous but it massively helps the arthritis. I’ve also had different forms of biologics, etanercept from diagnosis then adalimumab at 11 after I got uveitis but I’ve built resistance to that so they’re looking at changing it again.

The uveitis happened about three weeks after they’d discussed discharging me from the eye hospital. My eyes got bloodshot so we went to the optician who sent us to hospital where it was diagnosed. Luckily, they caught it early but it has made me conscious and I do get my eyes checked more regularly even though, they say, it’s unlikely to reappear."

Adapting to arthritis symptoms

"Pain and fatigue are daily which can be tough, and I’ve always had flares since I was little and that pain is hard to describe. I’ve had a flare since June which has impacted a lot but I know it will end, hopefully soon. The most frustrating thing is it makes it harder to do what I want to do but I just try and adapt. At the minute, my left knee can’t bend or bear my full weight so dancing has been challenging but I’m using crutches and my wheelchair.

I’ve always loved performing and don’t see why having problems with my leg or jaw should stop me, I just adapt. I don’t think anyone should give up what makes them happy just because it’s a challenge. I have had comments, ‘That will be hard,’ or ‘You can’t do that’ but I never let it stop me. It’s my life and you can always find a way to do what you want.

I try to stay positive because it helps and on days when I’m not coping well, I call my parents, I’m lucky I’ve always got a place to go with my feelings and that they always see me through it. My friends are very understanding too, really get it. Arthritis does impact my social life, I can’t go out partying three nights in a row, but then I’m more into films than clubbing and have regular movie nights with friends.

"I started a TikTok recently as part of wanting to speak out about arthritis and raise awareness. I put up a video of what university had been like while having a massive flare and how I was using crutches and wheelchair to dance, which is completely new for me.

Finding joy in dance

The Arthritis UK Arthur Tut dance challenge is amazing. Every time I’ve been in a dance class, I’m the only one with arthritis, on crutches or in a wheelchair so it will be great to join up with other people and show everyone that we can still do physically challenging hobbies. Dancing has always been very much my thing so I'm really excited about taking part.

I was on the Young People's Panel for Arthritis UK a few years ago which was good fun and it was so nice to talk to other people with JIA because I’d never met anyone else outside those events. I’ve got an amazing support network but it was nice to hear from others with the same issues, just sharing advice, understanding and experiences.

Arthritis UK are massively important because they are raising awareness and there is so little out there. When I tell someone I have arthritis, they always look confused because the assumption is it only affects old people when a lot of younger people have it.

Arthritis can be as much a part of your identity as you choose. I’m open and vocal about it because I want to raise awareness where as others might choose not to tell anyone."