From surviving to thriving with arthritis – Catherine's journey

29 November 2022
Share

Catherine, 28, shares her story of living with juvenile idiopathic arthritis, osteoarthritis and ulcerative colitis. 

“I’d started to walk and then immediately stopped walking.” 

As a baby, I started walking and then immediately stopped walking. I was dragging my leg around and couldn’t put any weight on it. It was a year or longer between my parents noticing the issue and my diagnosis of juvenile idiopathic arthritis (JIA). 

We went to the hospital, but the clinicians didn’t know what was going on. At first, they thought I had a tumour. Eventually, we found a doctor who knew the symptoms and I got diagnosed with juvenile idiopathic arthritis. My dad said it was a horrendous process. I’d go for scans and they’d have to pin me down because I’d start to scream. 

My parents hadn’t heard of arthritis in young people. Most people who don’t have arthritis in their lives just assume it’s a condition that affects older people. It was a massive shock, but I don’t think anyone realised how much it would impact my life.  

“I'm competitive so I always tried to take part.” 

When I was young, I was on so many medications. I had naproxen and it made me really unwell. I also took methotrexate tablets during my primary school years. I remember sometimes having to use a walking stick in school.  

I feel lucky that I was never bullied at school. Everyone knew I had arthritis. Little things stand out in my memories, for example, everyone used to sit on the floor with their legs crossed and I had to sit on a chair at the back because my knee was swollen and painful.  

In middle school, we had to do cross-country running and my arthritis affected my ankles and my knees, which meant I couldn’t take part. My teacher knew I had arthritis but said I had to run cross-country.

My Mum ended up talking to my doctor who wrote a letter to the teacher. In high school, I started biological medication and I’m competitive, so I always tried to take part in school activities. 

“I was so ill I was in survival mode.”  

In my third year of university, my hips started to play up. After graduating, I had to come home as I could barely walk – it turns out it was osteoarthritis. I studied creative writing and I couldn’t do the work I wanted to do. I had to get a total hip replacement and couldn’t work until half a year after that.  

I started a new job just before COVID hit and had to start working from home straight away. Then my stomach issues started, and I had to stop taking my medication because it was making my ulcerative colitis worse.  

Every joint became painful, and I used a wheelchair. My Dad had to wheel me from my bed to the other side of the room to work. In the end, I couldn’t sustain it and I had two months off work. My work were so understanding. I was so ill I was in survival mode.  

My mental health was impacted by my hip replacement. I thought my arthritis had ruined my career and didn’t think I’d ever be able to work properly. I started new medications, but it took two years to find medications that worked. 

“I did 2000 steps a day for one month to defy arthritis.” 

I find going abroad stressful, and I’m paranoid about the metal detectors going off! In 2016 when my hip was starting to flare, my Mum and I went to Berlin. I missed out on a lot because I couldn’t walk. I always have the thought in the back of my mind ‘what if I start limping?’ 

When I was really unwell, my childhood cat was so connected to me. She used to come up to me and sit on my hip. When I was in more pain, she'd sleep under my bed instead of on top. She sadly passed away last year. 

I love theatre and I used to sing, but I had never known someone with a chronic illness in a musical. No one has a crutch or wheelchair on stage.

I remember when I first saw the tv ads for Versus Arthritis – I'd never seen anything like it! I did a fundraiser when I was quite badly ill - I did 2000 steps a day for one month to defy arthritis. 

"Talking about my condition has helped me.” 

I’ve always loved writing. One of my main writing outlets is my blog, ‘Chronically Catherine’. It started as an online diary and a form of therapy for me. At the time, there didn’t seem to be much personal content about living with arthritis and I wanted to write an authentic account. 

Talking about my condition has helped me. I actively didn’t talk about it when I was younger as I didn’t want to accept that it’s a part of my life, but I need to, because it is.  

If you talk, you can receive support, otherwise, you bottle it up and don’t express your emotions.  

It can be managed and you can do the things other people can. They might just look a bit different. 

We’re here whenever you need us

If you want help, support or information, get in touch.

You might also be interested in...