Life with JRA/JIA – Part I: It’s time to share!

I had one of those ‘moments’ recently where something became abundantly clear.  I wrote a brief comment on a forum about my experience with JRA and soon after was slapped with the feeling that I have a journey to share and that someone may benefit from it. It is a lifelong journey; one which will never be covered by a single blog post. But, I must begin somewhere…

I was diagnosed with Juvenile Rheumatoid/Idiopathic Arthritis (JRA/JIA) by the time I was 4 years old. My parents were positive that there was something ‘wrong’ with me from 6 months of age, yet were faced with doctors saying that it was “just growing pains”, or suggesting they “stop worrying”.

As time went by it became more apparent that something was not right. Their baby girl would cry incessantly for no apparent reason, scream when put to her feet, cry and trip over when walking (to name a few symptoms). To put an end to my mother’s frequent but hopeless visits to the local doctor, a GP referred us to a paediatrician – Dr Billy Tao.

I am told that Dr Tao listened intently to all my parents said and posed a question that resonated and scared the hearers: “Have you ever thought it could be arthritis?” Obviously, my parents aren’t doctors and even Dr Tao couldn’t make a diagnosis on anecdotal evidence, but the thought was like a light bulb. It would explain so much. And, the thought presented many a question.

What followed was a barrage of tests, time in hospital and a waiting game. I can only imagine the anguish my parents felt at not knowing why their daughter hurt so much. It hurts me to think of the nights my mother cried herself to sleep, questions running through her head:  What will the future hold? What went wrong? Where to from here?

If I could speak to those questions and to those voices from the past I’d say:

You are amazing! You can do this! Your family can do this! Your daughter can do this! It is not your fault. The road ahead is rough at times, but it is a road you must travel down. You will hurt, but you will rejoice. You will overcome obstacles that others can’t even imagine. let alone tackle. You will love with an unending love; a love that understands that life is more than the superficial and material things on this planet. You will share in the sufferings and grow stronger for them. You will bend but not break. You will breathe hope and courage. You will cause a generation to live beyond themselves and inspire a nation. You will. Your daughter will. 

Now, that may all sound a bit cocky and far fetched, but I believe it! I believe that nothing I have been through is wasted and that my parents’ pain and effort to care for me and journey with me will have far reaching consequences: If I will stand up.

I’ll stand up and tell you of the journey. Of what I remember and what I have been told. I’ll take you through the last 30 years of “suffering” and tell you why I loathe that word. I’ll share the good, the bad and the ugly. I’ll share the torment and the pain. I’ll share the joy and excitement. I’ll share the hope that  I have found and continue to strive for in all circumstances.

We are more than conquerors!