Kaytie is 27 years old and was diagnosed with Still’s disease, a rare type of arthritis, at the age of 15. She describes her battle to come to terms with her condition.
My passion has always been dancing but aged 13, whilst playing the lead in a show, I started to get rashes, a fever and my joints were in agony. At first the doctor thought it was a virus but I continued to get flare ups of the same symptoms and I was eventually diagnosed with Still’s disease at 15 years old.
I had no idea what that meant but I soon learned it is a rare type of arthritis. I’m now 27 and people are shocked when I say have it. I get reactions like ‘isn’t that what old people have?’ or ‘you’re far too young to have that’. I find it really frustrating – there are 18 million people in the UK who have arthritis or a related condition and it shows there is still a huge lack of awareness of the condition in young people.
Hiding the pain
Half of us experience pain every day, yet if you met me you probably wouldn’t know it because I hide my pain out of fear of being judged or feeling like a burden.
There have been times when I couldn’t pick up a glass of water or open the door because I was in so much pain. The simplest things become the hardest challenges – emptying the dishwasher, making a cup of tea, doing my jeans up. Recently my ankles and hands have been bad and I’ve had to get a taxi to work as I can’t walk properly.
If I have something on I just pray I’m going to have a good day but I’m constantly on edge wondering what the day will bring. Relying on other people to do things for you is pretty tough and I feel like I’m annoying everyone. My friends and family are understanding and always there to help but it can be hard for people to understand. I have worried that I’m always going to be a liability to others and I’ve struggled to open up to anyone in fear of how they’d react.
I was on steroids for a period of time, which caused my face to swell up. On one of the days I was well enough to pop out for a drink, a boy from school commented on how different I looked. I pretty much cried for days afterwards I was so embarrassed, but they weren’t aware of my medication and the impact it had.
Adapting to life and work with arthritis
I’ve missed out on a lot of things through the years, including my dream to pursue a career in dance. A flare up might mean not being able to go into work. Thankfully I’ve found medication that helps an incredible amount but I still get horrendous pain that can stop me from being able to go to work. I hope by being honest with my employers about my arthritis from the outset, things will be easier.
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. I’m also back acting and so happy to be part of the entertainment industry in some way.
Knowing that there is no cure for arthritis at the moment and that I’m likely to have it forever is really difficult. I worry about how I’ll look after children if I have them. I love to host and cook for people but when I can’t even make a cup of tea, I feel very frustrated.
It’s good to talk – and share your stories
I still get comments from people who don’t believe I’m old enough to have arthritis but I don’t get upset anymore. Too many people with arthritis and other musculoskeletal conditions hold back from discussing their experience in case they are dismissed because it’s ‘only arthritis’ – but it doesn’t have to be like this.
Seeing other young people share their stories for something that depicted my reality so well has helped me massively, so I want to be as open as I can. Taking something negative and using it in a positive way has only empowered me. I’ve created a healthy mind-set for myself and one of my goals is to help other young people who have been diagnosed.
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. It’s an amazing feeling and a huge weight off my shoulders.
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(Any opinions expressed in this blog are not necessarily shared by Arthur’s Place. Nothing that you read in this blog constitutes medical advice.)