What is reactive arthritis? Student Charlie shares his story

Charlie, age 20, was diagnosed with reactive arthritis two years ago. His symptoms came on during his A Levels, making his exam period a very difficult time.

Now, Charlie has just finished his second year at the University of Nottingham. While he still faces certain challenges, he has learnt to manage his condition and is now helping to influence our support, campaigning and research work on our Young People’s Panel.

Here, Charlie shares his experience with reactive arthritis and explains what it’s like to be a student with arthritis.

Charlie’s diagnosis with reactive arthritis

Charlie was diagnosed with reactive arthritis when he was 18.

Reactive arthritis is a type of inflammatory arthritis that affects your joints after you’ve had an infection somewhere else in your body, such as a tummy bug or a throat infection.

It causes you to have extremely painful, swollen joints and can make you feel very tired.

“I woke up one day and it felt like my big toe had snapped off,” says Charlie. “It was immense pain out of nowhere and I was writhing around in bed in pain.

“I was repeatedly misdiagnosed, and it took about three months for them to finally confirm it was reactive arthritis with blood tests.

“It was full on when I was going through my A Levels. There was a period of around three to four weeks where I couldn’t revise because of the pain.”

Living with reactive arthritis

Unlike other types of inflammatory arthritis, for many people reactive arthritis lasts a relatively short amount of time - usually around three months to a year.

However, some people find it lasts longer and can have random flare-ups years after they first get it.

Two years since his diagnosis, Charlie still wakes up with his joints throbbing once or twice a week. He also still experiences pain in the affected toe.

“My left big toe is still about 50 percent bigger than the right one and still has general day to day aches in it,” he says.

“But generally, currently I’m pretty OK.”

Pain and mental health

The pain Charlie experienced when he first started getting reactive arthritis symptoms was like nothing he had never experienced.

“It was a 9/10 level of pain,” he says. “The flare ups are disabling. I went from walking everywhere and running seven times a week to not being able to walk down the stairs.”

“You can’t do anything. You’re completely dependent on other people.”

Living with arthritis can also be tough emotionally. It’s not uncommon for your mental health to be impacted when you’re dealing with fatigue and pain.

Charlie still experiences anxiety about the pain returning.

“I’m living in fear at the moment that it’ll come back,” he says.

Moving to university and making new friends

Charlie was diagnosed with reactive arthritis before he went to university. While navigating his arthritis pain and symptoms, he was meeting lots of new people.

Charlie wasn’t sure how to talk about his arthritis when he went to university.

“To this day I don’t know how to bring it up,” he says. “I don’t want to be known as ‘Charlie with arthritis’ but it often comes up in conversation quite quickly.

“It’s only recently I’ve had to learn how to bring it up in conversation and whether or not to tell people.”

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Clubbing with arthritis

For many students, nightlife can be a big part of going to university. Charlie didn’t want to miss out on meeting new friends, but he had to be careful not to overdo it.

“During freshers [week], my foot was flaring up a lot and you sort of have to go out to make friends,” he says. “I like to surround myself with sporty and outgoing people and they’re the type of people you find in the club in freshers week. I didn’t want to run the risk of not meeting my people.

“I’d say it was worth it as I’ve got a really nice group of friends, but I was hopping to the club.”

Charlie still has to be careful of his foot when he goes on a night out.

“I do enjoy going out and dancing, but my night can be ruined immediately by someone standing on my foot,” he says. “I’ll have to go home. Then it aches in the morning.”

“It all happened two days after my 18th birthday, so I’ve never been clubbing without arthritis. That’s a big thing.”

Joining the running society

Research has shown the benefits of regular exercise for people with arthritis. It can help to ease stiffness and pain, strengthen your bones and joints, and boost feelings of wellbeing.

Charlie has always been a keen runner. He wasn’t able to run for a while due to his arthritis, so he joined the university running society halfway through the year.

“They said I should’ve come from the beginning, but I didn’t want to tell everyone about my condition,” he says.

Now, Charlie is an integral member of the society.

“Since having fewer flare ups, I ran for Distance Captain and I got it!” he says. “I’ve come out the other side stronger and faster than I’ve ever been.

“I’m learning a lot about how my body works with arthritis, but from thinking I was never going to run again to being one of the captains at the University of Nottingham feels amazing.”

“It can be hard to withdraw myself from activities because of potential injuries to my foot.”

Joining the Young People’s Panel

The Versus Arthritis Young People’s Panel is a space where young people (aged 16-25) who are living with arthritis can speak out about the realities of being young and living with arthritis and influence our work.

Charlie is one of 15 people on the Young People’s Panel this year. So far, he’s really enjoying the experience.

“The panel is run by people who see everything regarding arthritis and there’s a wealth of knowledge there which is great,” he says.

“It’s helped me make friends and know there are other people in my situation. In most cases they’ve lived far longer with arthritis than me and they’re a lot more knowledgeable about it. It’s a great support network.”

Charlie is keen show other young people that things will get better.

“There’s a light at the end of the tunnel,” he says, “so just keep at it. It’s not going to be this way forever.”