“It’s a rollercoaster condition: life with rheumatoid arthritis”

04 September 2020
Chloe rowing a boat, standing by Hollywood sign and sat on the beach.

Dancer Chloe is 23 and has rheumatoid arthritis. “It’s a rollercoaster condition,” she says, “always up and down.”

Chloe does her best to maintain the mindset that although things aren’t always good, they also aren’t always bad. This helped her overcome the initial shock of being diagnosed at a young age, and it keeps her focused when her condition, or “lifelong companion” as she puts it, is making life difficult.

She’s here to tell us her story.

“It felt like the worst news.”

It all started while I was studying for a musical theatre course. I discovered some worrying symptoms and it eventually got to point where I couldn’t put my hair up due to the pain I was in.

I went to the doctors and after a lot of tests and appointments I was eventually diagnosed with rheumatoid arthritis. I was 19.

I gritted my teeth while I listened to the doctor, but when he left the room I burst into tears. I didn’t feel like it was real.

“I have a fire inside me to achieve what I want to do.”

I was told that a career as a dancer would most likely not happen for me, and I broke down. That was my lifelong plan gone, just like that. I fell into a two-week dark hole thinking it was all over.

Thankfully, I had my parents by my side. They helped me do loads of research and make a plan that worked for me.

Now, my arthritis just makes me more determined to reach my dream job. It’s also made me appreciate my health more than ever. On the bad days when it really feels like this condition is taking something away from me, I try to focus on this stuff – the things I have, not the things I don’t have.

“You have to be realistic.”

It’s not always going to be okay. There always comes a point where you lose yourself for a bit, and you don’t feel like you’re in the same body as yesterday. You will probably also worry about the future, wondering what state you’ll be in in ten years.

But, at the same time, it’s also not always going to be hard. I don’t want to come across as being too positive, but that’s the truth. A lot of days are good! With the support and love from my family and friends, an amazing rheumatologist, medication, and a few adaptations to my lifestyle, I am pursuing a career that I was told probably wouldn’t be possible.

Of course, the bad feeling comes back sometimes, like this morning when I was doing a workout and my knee was being a pain in the arse. But you can figure out ways of making it through those moments without holding on to all the negatives.

I’ve actually named my condition 'Arthur' as a coping mechanism, so that I can refer to my disease with his own little name in a lighthearted way. I prefer to deal with life with a pinch of salt.

“I could barely find anyone my age to speak to at the time.”

When I was first diagnosed, I googled 'young people with RA' and couldn't find much information out there, and of the stuff I found there was nothing very uplifting. This wasn’t great, so I recently started my blog, Arthur, to create a sense of community for young people diagnosed with arthritis.

For me, I didn’t want to make my condition public knowledge as I was in denial and embarrassed. Even today, I don’t like to moan about the pain while I’m at work, I’d rather just get on with it. So, you need people to talk to who understand what it’s like, and who won’t be surprised when you tell them: “I have arthritis”.

“Try not to write anything off.”

I think it’s really important that young people like me feel they can cope, especially in that time just after being diagnosed. Even though it feels like you’re going to be held back, don’t write anything off. You can learn your new life with arthritis.

We’re here whenever you need us.

If you’re feeling isolated from family and friends during these uncertain times, we’re here for you. Read advice and information for young people who have arthritis and their families, including how to ease your symptoms and tell friends about your condition.

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