On Being a Kid With JIA

By Rebecca, October 2016

My name is Rebecca and I was diagnosed with Juvenile arthritis in 1993, 12 years of age.

It was triggered from a small fall on the netball court. The afternoon after the game my right knee joint and entire leg had swollen so that baggy track pants fitted like tight gym leggings. The following day my left leg was in the same condition. Unable to move, in extreme pain my parents carried me to the GP thinking I had a bad sprain.

It wasn't a sprain, we weren't exactly sure what was going on. Sent home to rest, elevate and ice followed by weeks of x-rays, scans and blood tests. Off to another GP, through the recommendation of my dance teacher, who has seen her fair share in joint issues.

Arthritis was diagnosed, referrals to a Rheumatologist more tests and a confirmation that I have Juvenile arthritis in my major joints it was now in my wrists and elbows as well as both knee joints.

That day was 24 years ago.

Being so young there was not a full understanding of what it all really meant. I was more concerned that I couldn't play Netball again and would have to miss my dance concert.

The pain was challenging but my parents were very positive and encouraged me to stay active as much as possible in ways that I could. Swimming played a big part and I went back to dance which I think helped me so much in the long run as I continued to stretch and move and maintain flexibility.  Of course I was limited as to what I could do and looked more like a clumsy elephant as opposed to a graceful bird but I didn't realise that.

Along with staying active, rest was a big part of it - feet up with ice after everyday. My mum put me on numerous diets over the years, acupuncture, physio I have tried a lot of alternative lifestyle practises to assist in the pain management.

My disease initially was managed by anti inflammatory drugs and Cortisone injections and having the joints drained. I had weekly physio appointments for the 1st few years, as I could not straighten my joints. My knees were always bent, as where my elbow joints which put pressure on your hip joints. The physio was to straighten these all up. I am still not 100% straight even at my best my knees look very swollen to the normal eye.

The drugs would last a certain period of time and then I would become immune to them and move onto something else. I am currently on Enbrel.

All challenges faced with growing up have been heightened due to the disease. Initially there were challenges faced of stunt growth, puberty then as you progress into your teenage years it’s the need to fit in and be part of something.

Your 20’s is about managing the disease, growing your independence, dealing with life pressures and work stresses when all you want to do is go out and party and more recently it has been starting a family.

Certain memories stay with you, missing out on a seat on the bus ride to school, the pain from having to stand the 15min journey left me in tears everyday in the bathroom, the toilet being the only seat to rest and stay hidden.

Recently the emotional guilt around having to take drugs and how they would effect your unborn child.

My disease is in a manageable state, but that is only due to self-determination in piecing the puzzle together over the last 24 years. For me balancing being active, rest, managing stress levels and a balanced diet are the key to living comfortable with arthritis. This is easier said than done. Sometimes I am good and sometimes you know when you need to get back on track.

Recent challenges have been falling pregnant and giving birth to my 1st baby boy. Falling pregnant and manage the disease whilst trying to be on no drugs was very challenging physically and emotionally. Having had bub, now he is 18 months old, rest and being on your feet all day running after him is challenging.

I understand my body and triggers very well now and for me it’s about staying in tune with my body to avoid a flare up.I would average a really bad flare up every 6-8 months where I need Cortisone Injections and joints drained and then I need to rest not moving for a week or so.

My mum and dad are probably the ones that truly understand my suffering and pain. I have never really spoken about it and always down played it to peers. More so as I have gotten older as I have it at a manageable level. I feel pain everyday, but it becomes the norm.

I am excited about the future, growing my family and the adventures and fun times to be had.