#ThisIsJIA by Melody

Pre 2002 I was so full of life, I did Gymnastics, Netball, a bit of Cricket and I absolutely loved sports day, I ran the 200m every year! I caught the Flu in April 2002; I was quite poorly and lost my voice for about a week. Although I recovered from the flu, as the weeks went on something didn’t feel quite right; my right elbow started to really hurt, and I could not straighten it. My dad would constantly say “what’s with your arm?” or “straighten that elbow Mel” but I simply couldn’t. I was getting tired just putting my shirt on for school and it was so painful.  Therefore, in September 2002, my mum took me to the doctor who said, “it’s just a strain, probably from Netball, it’ll get better with exercise”. Unconvinced, she sought a second opinion, and the second doctor said immediately “I think it’s Juvenile Idiopathic Arthritis,  we’ll get a blood test done.”  The very next day I was at the hospital having bloods, and we had to wait there for the results.  

The results were in… 

When the words “Juvenile Idiopathic Arthritis” came out of the consultant’s mouth, I refused to believe it – in fact, the first thing that I said when I heard the word ‘arthritis’ was “but I’m not old”, the most common misconception!  I pleaded for them to re-do the test, but the doctor confirmed the diagnosis to be correct and that unfortunately on top of that, I had the most aggressive form- I have never been one to do things by half! 

We were sent home later that day without the person I once was; I now had to learn a new way of life and a new daily schedule of medications, hydrotherapy, physiotherapy, rest, repeat. 

After diagnosis, I was losing weight rapidly. The consultant said it was the JIA so put me on sugary milkshakes, but I continued to lose weight and was always thirsty, tired, and constantly needing the toilet. My nan, who was a nurse, told my mum to get me checked for Diabetes and on the very day I had that blood test my mum got a call to say “get Melody to the hospital” she has type 1 diabetes. In the space of 2 months, I had 2 diagnoses to deal with. 

School was difficult, some of my friends did not understand why I had to use the lift or could not do P.E anymore and I missed a lot of school as a child, mainly due to pain. 

I remember going to South Sea and we were walking down the pier, my mum propping me up and I joked about the OAPs being faster than me; we laugh about it still, but deep down it was hard to see, I was grieving for my old life and wanted it back. 

As the years went on, I managed to go into Remission once, then left school and tried college. I managed to get qualifications in Beauty Therapy but unfortunately had to give it up due to operations. The damage I have now, after 23 years, is irreparable and in combination with other health conditions, is often debilitating- however, the advancement in modern medicines which prevent long- term damage to joints means that thankfully nowadays children and young people should not have to experience what I have been through.  

With all this being said, I wouldn’t ever change it, I have the best husband in the world and 2 beautiful girls, which I didn’t think was possible. I’m living my life the best way I can and I’m okay with that. 

Having a diagnosis like this isn’t the end of the world and the medication available now is second to none. Living with JIA or RA is hard, and it will fight you every step of the way but if you continue to fight it back you can still do the things you enjoy, with just a bit of extra care and planning and knowing your limits. Don’t let it control you, take control. There’s life after diagnosis and I’m proof of that. 

I wish anyone newly diagnosed or a veteran like me the best in life ✌🏼