"I thought I’d never open up about my condition"

Kaytie with her friends.

Growing up, Kaytie, now 27, had a passion for dancing. When she was the lead in a show at 13, she started to get rashes and a fever, and her joints were in agony. At first they thought it was a virus, but she continued to get flare ups of the same symptoms.

When I was diagnosed with stills disease at 15 years old, I had no idea what that meant. It had taken three years to get to this point as not many doctors had seen a case like mine. Initially I felt relieved, because I thought that the doctors could just prescribe a course of treatment and we could cure it. But they told me that actually this would be a life-long condition.

I thought: “I’m always going to be a liability to other people now. I’ll need to ask for help and get people to do things for me”. I didn’t like the thought of that.

It made me really insecure

There have been times when I couldn’t pick up a glass of water, or even open the door to an appointment with my doctor about my medication.

I missed out on a lot of “normal” things growing up like going out with my friends and being independent in the same way they were starting to be.

I was on steroids for a period of time and it caused my face to swell up. One day I was feeling well enough to pop out for a drink and one of the boys in school commented on how different I looked. It made me really insecure growing up.

Even into adulthood I’ve found it difficult to handle. Thankfully I’ve found medication that works for me which means I can pursue dancing again, but my body can only do so much before it flares up.

Arthritis has changed my career choices and dreams of pursuing a dancing career.

I used to be a personal trainer but I knew my condition would have suffered if I tried to grow my client base. I now go into an office 3 days a week. It’s early days there but I’m already nervous about what it might mean for my symptoms, and about letting my employer down.

I’m also back acting and so happy to be part of the entertainment industry in some way.

Growing up I didn’t want other people to know

If someone said anything out loud in public about my condition, I’d get really self-conscious and upset. I really didn’t want to talk about it and I didn’t want other people to know about my diagnosis.

But because I didn’t open up about it to anyone, no one could really understand the pain I was in. I used to find it really difficult to explain so I never brought it up.

The people around me didn’t have the opportunity to understand the pain I experience and how it impacts my day to day life.

I’m lucky that my friends and family understand my condition and when I can’t attend an event because I’m in pain.

But those that didn’t understand the true extent of the agony I can be in during a flare up, the adverts have really helped to explain it and show that it’s not just an excuse to get out of something.

Since I saw the TV adverts, I’ve started talking about my condition a lot more

When I saw the Versus Arthritis campaign last year, I thought: “Finally, people are going to understand what I’m going through”.

Before then I’d never been able to explain it well, but now I could show people the advert so they could see how agonising the pain is.

Thanks to the awareness that’s being raised I’ve gone from being a really private person about my condition to feeling like I no longer had to dismiss the pain I was in and that I didn’t have to let it define me.

Having something that depicted my reality so well helped massively.

I’ve started talking about my condition a lot more in day to day life, now that I feel comfortable speaking to people about what I’m going through.

One friend in particular has said they didn’t realise how painful it could be for me, and so many people around me are more understanding when I’m having a bad day since seeing the adverts.

It’s an amazing feeling and a huge weight off my shoulders.

We are mounting an opposition to arthritis

Too many people with arthritis hold back from talking about their experience because they feel like a burden, like they would be giving up, like it’s ‘only arthritis’.

It doesn’t have to be like this. We are growing a community that stands with people with arthritis.

You can take action today

Join us and thousands of others across the UK pushing back against arthritis by declaring yourself #VersusArthritis.

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Find out more about arthritis

Read more about the symptoms, treatments and complementary therapies and advice on managing the condition.

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