"With hard work, determination and a bit of problem solving you can achieve anything."
My dream was to be a hairdresser, my doctors told me it could be too harsh on my body and I wouldn’t be flexible enough to get the right angles. However, I am now nearing the end of my hairdressing apprenticeship and I am doing it! I have adapted my techniques to create the same result as everyone else. I do it and do it my way! Here’s my story…
I was diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was 10 years old, I’m now 18. However, my symptoms started when I was 8. I used to wake up with severe joint stiffness - not being able to move my fingers until later in the day, and even then my mobility was limited.
My parents took me to the doctors repeatedly just to be told it’s growing pains. This went on for months! Then, finally, an amazing doctor decided to investigate further and I was later diagnosed with JIA.
I was referred to specialists, to be told that I had over 40 joints massively affected, and I was told this was the worst case they have seen. I remember being so scared because I had never even heard of JIA before. I remember crying because I had to stay in hospital for a long time and have steroid infusions and then I also started methotrexate injections on a high dosage. It all happened so fast I didn’t have time to really come to terms with things.
Methotrexate soon started to become my worst enemy! I had such bad sickness with it and had to inject every week, I dreaded every Thursday!
I started to take more and more time off school due to hospital appointments. It was so difficult with my teachers, because they didn’t know about JIA and they couldn’t understand my needs. I couldn’t work in the same way as everyone else - I couldn’t even sit down on the floor. I couldn’t pick up a pen and write in the morning.
As I moved on to secondary school I was bullied, as some people couldn’t understand why I had to do my school work on an iPad instead of pen and paper. It was hard to understand as JIA is not a widely recognised condition. I couldn’t participate in sports or other activities.
So I decided to look into other hobbies and I fell in love with hair styling. Every night after school I would go on YouTube and teach myself another braid, but I had to adapt the technique as I was doing it as my fingers weren’t too flexible.
Towards the end of school, everyone started choosing their career paths. I decided to get a Saturday job at a hair salon. At first my doctors were very concerned as the job would require a lot of standing, so it would be hard on my knees and my back. However, I still decided to carry on as it is my dream job. As I finished school I got kept on as an apprentice. I started to do my training and I started to work out ways I could do things differently to the stylists who were teaching me as my flexibility was limited.
I’m not the type to give in and give up to my JIA.
I went home after work and every night I would practice and perfect my skills, so I could progress as much as possible. I had to think about how I could get the correct angles without over-compensating my back. I came up with the Sophie way! As I progressed and became more experienced, I started cutting hair, which involves so much wrist movement and strength on your arms especially when layering the hair as you have to hold the hair so high up. I was going to a physiotherapist, and doing lots of exercises to improve my strength and movement.
I am now almost qualified as a hairstylist. When I’m styling my clients’ hair, I’m achieving the same results as everyone else, but I just have to go that extra mile to get there!
With hard work, determination and a bit of problem solving you can achieve anything - little or big - if you put your mind to it, even with JIA! Dreams can be followed!
Written by Sophie, aged 18
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org
For World Arthritis Day, Sophie has written more about living with JIA in her news post here.
Some examples of Sophie's hair styling skills.