Jazmin's JIA journey

I cannot recall a time when I did not have JIA. That was because I was diagnosed at 2.

Jasmin

I cannot recall a time when I did not have juvenile idiopathic arthritis (JIA). That was because I was diagnosed at 2.

Mum told me the first time she noticed something was not right was when at 18 months, having learned to walk, I stopped walking and would shuffle on my bum. Mum would try to get me on my feet again but then I would sit straight back down.  My granddad told mum to take me to the hospital. The local hospital dismissed my mum saying there was nothing wrong with me, but my mum, carrying me in her arms, stood her ground. She refused to leave, as she knew that her first born was not well.  After being misdiagnosed, I was in Great Ormond Street Hospital for months on end being a newly diagnosed systemic JIA sufferer. I do not remember much of the ‘bad stuff’ at that age. I remember I had a doll called Sally and I lost it in the hospital, and I asked all the nurses if they had seen her.

It was when my sister was young and I was a little older that I noticed I was ‘different’ from her. “Why am I hurting? Why do I have to go to hospital? Why do I have to take this medicine? Why me?” I was an intelligent and inquisitive youngster who enjoyed school and sociable too on my good days, but I was a little more reserved on bad days. Sometimes when waking up I would be in too much pain due to a flare so mum, my dad or even my sister had to either help me get dressed or my Nan had to come round and look after me while mum and dad were at work. Before moving towns, I remember every Friday morning just after the first lesson I would leave school to go to hydrotherapy and how much fun that was. 

I became more aware of how important medication, appointments, taking care of myself and seeing the OT, podiatrist, consultant and physiotherapist was around the time I started secondary school. I knew I had an illness that made me hurt all the time and I knew that kids I was with in primary and secondary school would not have it. At the age of 12 I was quite self-aware of that and greatly independent, and at this time or a year later, I started to do my own methotrexate injections. 

It was when I was about 13 or 14 I went to a Children's Chronic Arthritis Association (CCAA) weekend and met other kids like me and it was completely life changing, not just for me but the whole family. I am still friends with some of those I met! Throughout secondary school I learned more and more about my condition and my limits. But also realised what I wanted to be in life. Being a teenager is about finding your place in the world but I think with JIA or any chronic condition, you have to learn to co-exist with it. 

By the time I reached the end of 6th form at 18, I appeared to not have any more flares and due to a long period of gradually reducing the amount of methotrexate and then putting it back up when I flared, I was completely off it. 

At university, I was still off methotrexate and not having joint injections (apart from one exception when the pain in my wrist was bad) and finding my confidence as an individual. I was in complete control of my illness and was doing a degree I wanted to do. The main JIA problem that arose, and now is persistent, was the chronic fatigue. I had always had it but it felt like it ‘caught up’ with me, maybe because I was staying out later. But that was a learning curve for me, I now know the rough time I need to call it quits and just go to sleep! Now that I am older, I see that my health takes precedence, socialising can suffer a little while I recharge. And people who know me well enough understand and respect that. 

4 years after the undergraduate, I went straight into a full-time masters. It was demanding both mentally and physically (due to the subject and length of time of the course) but I knew what I could and could not do because I learned that for the past 20 years. 

Now after 21 years of having systemic onset juvenile idiopathic arthritis I am a PhD student and the illness does not stop me from what I am doing and want to do. My journey so far can only be described as an emotional rollercoaster for myself, my family and friends and filled with self-awareness, self-education and understanding. 

And would not change it for the world. 

Although I wish I found Sally. 

By Jazmin Scarlett