Hi. My name is Kayleigh* and I have lived with JIA (Juvenile Idiopathic Arthritis) in both of my ankles for 10 years now. I was diagnosed at the age of 7 years old. Young enough to not know how this was truly going to affect me but old enough to remember a life without it. Between 7 year old me and 17 year old me it's been quite a roller coaster. I have 7 surgeries (3 of which on my left ankle), I’ve been on 4 biologics, 4 DMARD’s, been on steroid tablets and infusion numerous times and seeked opinions for hospitals throughout the country.

Growing up with the condition was difficult for both myself and my family. As a young person you are already going through hundreds of stages, emotions, hormones, experiences that can appear quite daunting. Having JIA came with a lot of confusion, anger, frustration and loss. However, it also came with courage, resilience, drive, and something that surprised me, a community.

I’ve always loved any kind of art. I found It very therapeutic and calming. When Teapot Trust was recommended to us, we went for it. I was a lot younger when I first went to a group session with Teapot, but I vividly remember the impact it had on me. 1 in a thousand people have JIA so at this point I hadn’t met a single person with a chronic illness like mine. Going to these sessions opened my eyes to so much. I met other children who were going through the same experiences and worries that I was. We were chatting and laughing around a table full of arts and crafts for us to go crazy with. The waiting rooms can be quite a scary place, especially for parents. Teapot Trust in those waiting rooms allowing children to be distracted and have some fun in what can be a pretty hostile environment helps families so much during those difficult periods. Parents being able to see their child smile and have fun during times where they feel lost can remind them of the hope and happiness that is still there.

I continued doing art even when I didn’t see Teapot Trust. They showed me that it was the way I could get away from it all and even the daily stresses of being a teenage girl. My parents, my rheumatology team, my surgeon, they never gave up on me. Looking back now I realise how much I appreciate them and all the people I met along this journey.

I am currently on Abatacept, Hydroxychloroquine and Leflunomide. My inflammation is finally being controlled which is something I never thought would happen. I want to show people that chronic illnesses like mine don’t have to be the reason why you don’t pursue your dreams. Throughout my childhood I had to stop doing many things I loved and that made me happy. I thought it would be like that forever. Little did I know that 17-year-old me would be fundraising for a year away in Malawi to teach young people English/ maths. I proved to myself that I truly can accomplish my dreams and make a difference across the world.

Banner image painted by Kayleigh