- Location London
- Type of Arthritis Systemic JIA
- Date of Birth 1992
- Age at Diagnosis Five
Stephanie, 25, started working for Arthritis Care as a young people and families project co-ordinator in August 2015 after a long connection with the charity.
She found out about Arthritis Care and our activity weekends for young peoplewhen she was at a very low point after having a big flare-up of her systemic juvenile idiopathic arthritis (JIA) when she was 17 years-old.
I was diagnosed when I was five. I struggled to walk and kept falling over. I couldn’t move properly, I wasn’t eating or drinking and was taken to A&E - they said it was a virus and sent me home. I then got a rash and high fevers and was admitted to our local hospital. They eventually diagnosed me with systemic JIA. I was in hospital for three months.
To be honest I can’t remember much about my arthritis or my early years at school. It was an unhappy and difficult time for me. I felt I was treated differently from other children because of my arthritis – for example – I had a special chair to sit on (that the other children had to carry for me) for school assembly while everyone else sat on the floor. The school didn’t understand. I missed lots of time in school, my education suffered.
I’ve been on biologic drugs for the last four years and it keeps my arthritis well controlled. I’ve had many flare-ups in my life, sometimes taking six months to get the arthritis well controlled again. I can’t say for sure but some flare-ups have occurred at stressful points in my life.
I remember having a particularly bad flare-up in year four and five. I was very ill and in a wheelchair. I’d also become overweight due to the steroids I had to take. As a result, I was bullied at school and it affected me socially. I moved school which provided a lot more support, I was able to catch up with my peers and I left secondary school with good exam results.
Finding Arthritis Care and changing my attitude to arthritis
I went to college to help me in my ambition to work with children but I found this exhausting. I had a big flare-up at the end of the first year and I had to take a couple of months out. They were really understanding
When I was 17, whilst at college, I hit a real low. I had no confidence, I didn’t have a social life and didn’t go out with friends. I felt quite isolated and alone because no one really understood my condition and what I was going through. I was really worried about the future and what it would hold for me.
Surprisingly, I’d got to 17 and never met anyone else with arthritis before. I started to look for support groups online and found out about Arthritis Care activity weekends. I signed up for it online.
I came away from the activity weekend with my attitude to arthritis completely changed. Clare Reid, one of our trustees, was one of the volunteers – she is such a good role model. I found her so inspirational. I completely changed my outlook and attitude to arthritis. She gave me tips on how to think about it differently and ways to do things that make things better for you and ultimately not worry about what other people think.
It was great because everyone else there had been through the same issues as me and we all really understood each other. I’ve never felt alone since attending that first activity weekend. I came back a much happier person. It taught me to realise that if I worked hard, I could do well and achieve anything I put my mind to - my arthritis doesn’t have to hold me back.
Going to university
After four months at university at the end of my first term, I was still in hospital at the end of January. I was very upset about it as I was starting to miss lots of course work. We decided that the best thing would be to postpone my first year until September and start the first year again.
My arthritis made me more determined and stubborn to finish the degree course (I got a first in the end!) and get the degree I wanted to be able to work with children in the future. Delaying the course for another year was the best thing I did. The people I met at uni have become such good friends I’m so pleased it worked out the way it did.
I don’t know where I’d be without Arthritis Care
To be honest, I don‘t know where I would be now without Arthritis Care. Before I got in touch, I was really down and saw no real future, I was very negative and didn’t think I could achieve anything. I’ve changed the way I think about things now, and I’m more positive about being able to achieve my ambitions.
I enjoyed the weekends so much I decided to become a volunteer, and then went on to get a job as a young people and families project coordinator with the charity. The other volunteers are a fantastic support network and I have made many friends for life – I don’t know where I would be without Arthritis Care.