It’s been a long day and all I want to do is vege out on the couch. I slink down on the cushions and throw my feet up, one leg strewn lazily over and straightened so that I get one big stretch. Then about 15 minutes pass and there’s a problem.
“Oh no…” I stare at my unmoving legs.
My friend, who’s sitting just like I am on the other end of the lounge, asks me what’s wrong?
I look up sheepishly, because at this point it’s as funny as it is embarrassing.
When I was 18 months old, just after I started walking, I started dancing. As a child of excellent musical taste, my parents told me that anything from the Wiggles to Enya would get me up and moving. But then, something happened and suddenly I couldn’t dance. That’s when we found out that I, a toddler, had Rheumatoid Arthritis. The Juvenile kind.
It started in my right knee, then the left, then the left ankle, then the right, both arms at once, then my right wrist and middle finger, and finally my neck. This all happened over many years and mostly, it’s never really bothered me. This is the life I’ve known for, well, all my life – and (so far) my life’s been pretty alright independent of it. I can thank arthritis for helping me develop passions for drawing and storytelling, even if it was at the expense of some extra running around. In many ways, arthritis has sort of made me who I am today: a strong person who values her independence.
But there have been some downfalls to having a disease no one can see, that not many people understand and, sometimes, that people actually don’t believe I have.
What was it like growing up with Juvenile Rheumatoid Arthritis?
I was ashamed of my arthritis, but keeping it a secret was pretty difficult. Because my medicine suppresses the immune system I would get sick seemingly from nothing, which teachers often interpreted as me being lazy and trying to get out of work. I would struggle with things like bending my arms to brush my hair, or standing up for long periods of time in choir, which made me seem disheveled and weak. And more than anything, living like this was extremely isolating.
Nevertheless, I still only let my closest friends and a handful of teachers know about it because I always hated the ensuing conversation which would inevitably go one of two ways: intense pity or plain old disbelief.
“What? No you don’t, I’ve seen you do sport!”
“Oh no that’s awful… do you need to sit down right now?”
“…I thought arthritis was what old people get? How could you have arthritis?”
Or my favourite:
“You better sit this one out Bec, you know, because of your arthritis.”
This isn’t to say that these reactions are wrong or that these were bad people – I mean, how are you supposed to react when someone tells you they have arthritis? There’s no right way. However, as a child, I became uncomfortable with my disease early on, feeling that if I drew attention to it then I’d also have to prove it existed; on the other end of the spectrum, I politely reject the good natured but over-the-top help from others. I hated it, and erased it from my identity.
But then, another something happened: my arthritis got worse.
The thing about Juvenile Rheumatoid Arthritis is that you’re supposed to grow out of it, but I never did: it grew with me. So, as I started to mature and learn more about my disease, I decided to make a conscious effort to try to embrace that little part of Bec that I had been neglecting and hiding and hating. And what I found was that a lot the problems I’d had with misplaced pity or scepticism came from a general lack of understanding around arthritis.
So let’s go through the basics of Rheumatoid Arthritis (as told by a person who often finds your pity more upsetting than her chronic disease).
Unlike the Osteoarthritis that you see on all those Voltaren ads, Rheumatoid Arthritis has nothing to do with your joints wearing down and can affect people of all ages and activity levels. Juvenile Rheumatoid Arthritis is an autoimmune disease where the body attacks the lining of joints and, as a result, a person’s affected joints swell up in irritation. It affects between 10-20 out of every 100,000 children and typically affects girls more than boys.
While it can lead to growth and development issues, with the right treatment and help from your friendly neighbourhood Rheumatologist, it is completely manageable and often has a very minimal impact on a person’s life.
That said, yes, sometimes my joints do lock up, and I need a second to unlock myself. And yes, it’s super awkward to uncomfortably try to bend yourself in front of someone, like you’re the rusted Tinman, while attempting to remain casual. Luckily for me, I’m fully aware of my own limitations and and often my creaky joints sounds a lot worse than they feel.
My relationship with Rheumatoid Arthritis is in a much more positive place now, but I’m still not fully comfortable with it. It’s hard to come to terms with the parts of ourselves we don’t like. But when that part of you has shaped the person you are today and has even changed the way you live your life, I think it’s safe to say that it sort of becomes a part of your identity. I believe, it’s important to own who you are, no matter how awkward or uncomfortable it might make lying on your lounge with your friend.
It’s easy to react to a life that’s different to your own with pity, but if you really care about the person you’re pitying you’ll take the time to learn about their life and experience and switch those sorry feelings over to their cooler cousin: empathy. Sometimes it can feel like a fine balancing act; knowing when to lend a hand, but trust in that help will be asked for when it’s needed, and respect a person’s right to be proud and independent all on their own.
If you’d like to know more about Rheumatoid Arthritis from like, I don’t know, a medical professional, or whatever, you can check it out here.
You can also help support further research into the improved treatment of Arthritis in kids by checking out the Arthritis Foundation.