I know, two posts in one day must seem a bit obsessive but I was forwarded this article and just had to comment about it, since I related to it in more than one way. Plus, it is coming up to the end of July, which has been Juvenile Arthritis awareness month in the US, so it seems a good time to look back on things.
First is the story of Brynn, who has a form of Juvenile Arthritis and talks about having to deal with the fact that she is unable to do a lot of the things she would like to – play volleyball and soccer etc – while she fights through some level of pain because she is determined to participate in other activities that she loves. Of course I’m reminded how, as a child, I couldn’t continue my dance classes; and then, as teenager, how I had to stop all the things that I loved too – horse riding, athletics, cycling, netball, hockey… I went from being the talented, sporty one that was always on the go, to the one who could only sit on the sidelines and watch, in just a matter of months.
Coming to terms with these limitations is one of the hardest parts of living with this illness; it’s not just a one off occurrence but something you have to deal with every day. I have never stopped wanting to do those things (and other things that crop up over time), but I have to be realistic without giving up hope that maybe one day it will be possible. In the meantime, I’ve realised how important it is to find things you enjoy and can do, even if only in small bursts.
I scroll down further and see the heading ‘Hurt to Be Touched’ embedded in the article and am drawn to it straight away. That’s a phrase we used so often during the early days; in fact, the whole description of Ashley Matthews’ experience is identical to how my symptoms presented at 14 – the muscle weakness and tenderness, the pain that even a hug from my parents could cause, having to be carried up and down the stairs, not being able to stand or even roll myself over in bed. I remember the films and photographs that my paediatric rheumatologist took of me trying (and failing) to sit up and pull myself up off the floor…
Then I see the word Dermatomyositis and it all makes sense because, as I have briefly touched upon in My Story, this was actually my previous diagnosis and it still resonates with me. Like me, Ashley was first treated with a massive dose of Prednisolone and had to endure cruel taunts as a result of the effects. I was lucky in that I had nothing but support from children at my own school, but not everyone was understanding – strangers, even adults could be insensitive. I remember my local shop keeper refusing to sell me a Mars Bar because ‘I looked like I’d had too many already’.
So I can really empathise with both girls in the article and know there are many others going through the same. The main point I want to get to though, relfects back to the title of the article and is the statement that it finishes with – a quote from Ashley Matthews herself – which I think is extremely inspirational. On dealing with her illness, she says: