I am 28 years old and I have lived with Rheumatoid Juvenile Idiopathic Arthritis for over 24 years! It all started when I was three, my mum noticed my right knee was severely swollen. I was brought to the doctors and was treated as having reactive arthritis (I was very prone to tonsillitis when little). But when I started losing weight and became frail looking, doctors became concerned that it may actually be leukaemia. Tests were run but despite being rheumatoid factor negative, I was diagnosed with rheumatoid arthritis shortly after my 4th birthday.
My story with arthritis now is very different from what it was like as a child. As a child, I spent a lot of time in hospital, used a wheelchair and had days I couldn’t even roll over in bed! Starting Biologics around the age of 10 was life changing for me but there are still days which aren’t without their challenges. When I was pregnant with my first child, my arthritis flared up in the third trimester as I had to stop my Biologic and instead required steroids to help keep me functioning. But I had days as a new mum when I couldn’t lift my baby without help or change a nappy without being in pain. On the whole though , currently I’m fortunate enough to live my daily life without too much impact from my arthritis. On the days when it does flare up, it makes me even more grateful for the medications available to me and at no cost (thank you NHS!). I also have osteopenia in my spine from the prolonged use of steroids. I started them when diagnosed and didn’t manage to get off steroids until I was 18. So going back onto them again after postpartum (with both pregnancies) has been a bit deflating.
When I really think about it, living with arthritis for me means living with a constant question mark over things - when will the next flare up hit? What will my joints be like when I’m 50 given that they already look and function like a 50 year olds? When will I need my first joint replacement? Will my children end up with arthritis too?
But my arthritis has also given me experiences and opportunities I wouldn’t otherwise have had.
I think arthr's mission is fantastic! What people don’t often appreciate is that arthritis can be a ‘hidden’ disability so people may have no appreciation of how the everyday ‘little’ things can actually be a big challenge for someone with arthritis i.e. being able to reach behind your head to dress your hair, turning a door knob can be impossible compared to a door handle, pulling out a plug etc.