When your invisible disease becomes very, very visible.

My mum has been there for a lot of firsts in my life – first day of school, losing my first tooth, first bra, first pimple, first job – and at twenty-nine, I was hoping the next first I would share with her would be buying my first house, or having my first child.  No, the first that we shared last week was a little different.  You see, this week it was time to make a financially small, though significant purchase.  My first walking stick.

We were browsing the range of sticks in the store, when the salesperson approached us.  “Oh, you’re too young for those.” she said, addressing my mum. “It’s for my 29-year old daughter” replied Mum, not batting an eyelid.  The salesperson tried to mask her horror as she took me in.  It was one of those moments where it feels as though the world is in slow motion, an uncomfortable silence where crickets chirped, pins dropped and if it were more than a moment, the ticking of the seconds on the clock above my head would’ve been like gunshots.  

You see, I was diagnosed with Rheumatoid Arthritis almost eight years ago.  I was a vivacious uni student who loved life, and all the adventures that came with it.  It was during a uni lecture on RA that I sat with my friends, taking notes, and listening to the lecturer reel off the symptoms.  Initially I took down the lecturer’s words, but after a few symptoms were mentioned – morning stiffness, joint swelling that affects both sides of the body, fatigue – I felt my heart sink.  It took less than a month for me to be officially diagnosed, and start taking the cocktail of medications that were meant to minimise the damage from the auto-immune disease, while giving relief from the symptoms.  There have been good days and bad days in the past eight years, but in recent times the disease has had the upper hand, and left me barely able to walk.  It was for that reason that it came time to bite the bullet and buy my first mobility aid.

So back to the uncomfortable silence in the (now, somewhat uncomfortably) small shop.  I felt the woman’s eyes cast over my body.  I’m not sure she meant to, but it felt like she was both boring holes in me with her curiosity and pity.  Perhaps I’m not as evolved as my fellow RA patients, but I am incredibly self-conscious about the way my body has been ravaged by this disease and the drugs.  She studied my face, no doubt getting lost in the blackness of my eyes, after months of less-than-adequate sleep, which has inevitably led to bags under one’s eyes that would not be permitted as cabin baggage on any domestic airline.  I had hidden my red, sausage-esque fingers, attached to swollen and angry hands, in fingerless gloves.  My knees, ballooned to three times their normal size, were hidden under tights and a below the knee-length skirt.  Normally I’m a dedicated jeans girl, but a) my balloon-esque knees don’t fit in the legs of my jeans; b) my inflamed and fluid-filled hips scream whenever I try to wear anything with a non-elastic waistband; and c) my rapid weight gain from medications used in an effort to reduce the inflammation that is attacking my body has apparently increased my waist circumference by one, if not two sizes.  For all intents and purposes, I looked just like any other twenty-something she would have encountered that day – though, from her reaction, I’m guessing I was the first buying a walking stick.

I selected my stick from the rack (incredibly disappointed it didn’t jump into my hand as I extended it, a la the broomsticks in Harry Potter) – a gleaming black stick with multicoloured pattern, babbling away about how the pattern would mean that my new stick would go with everything in my wardrobe.  Never mind the fact that a person who is not yet eligible for the age pension shouldn’t have to use one.  With the swipe of my card, my RA transitioned seamlessly from an invisible disease to a very visible one, with the stick undoubtedly becoming the justification, explanation and validation of an illness that affects almost every aspect of my life.  It may be a sign that the disease is winning, but I can assure you that the stick will be folded up and packed away as soon as I can manage without it.  Until then, my pretty stick and I are going to do our best to bring sexy back to RA – one step at a time.

Rheumatoid Arthritis is a double-edged sword.  It makes me stronger, more determined and more stubborn than I have ever been.  But its invisibility is a curse.  Unless people know me, and know what to look for, I am an ordinary (though extraordinary, in my humble opinion) girl.  I meet dignitaries and politicians and have to mask my grimace as they shake my hand in that firm, confident way that all but crushes my knuckles.  I noticed people silently judging me as I limp around the supermarket, or as I stop to gather my breath (and courage) to continue on my journey.  My disease is invisible, but that certainly doesn’t mean it’s not real.  I feel my friends slip away as I am forced to turn down invitations – because either I’m exhausted, or my symptoms are too overwhelming, or I am simply too poor as I’ve been off work without pay for too long.  I watch the pained expression on my Mum’s face as another needle is plunged into my body, as another drug drips into my vein, as another glimmer of hope fades away.  The pain I see in her eyes is what breaks my heart the most.

This Sunday is Mother’s Day in Australia – and as a gift to her this year, I pray, somewhat selfishly, that I am better.  Because not only have I had enough of my invisible disease slowly destroying my hope, but I have more than had enough of it inciting the maternal guilt that my mother carries for having passed 50% of my genetic material to me.  While RA runs on both sides of my families, it has mercifully skipped my parents (thus far) and landed a king-sized helping in my lap.  I pray that this Mother’s Day I am well enough to cook my darling Mumma a meal, or at least sit through one with her without having to excuse myself for more narcotics or to lie down.  I want to give my Mum one day – or at least a part thereof – where she can rejoice in all the wonderful things she has done and passed on to her children.  Her selfless generosity, her kindness, her willingness to sacrifice for her children, her empathy, her wicked sense of humour, her perfect complexion, her ability to defy the laws of aging, her laugh, and her ability to innately sense what will make me feel better at any given moment.  

So to Rheumatoid Arthritis – you win this battle.  But because my Mumma makes me stronger, holds enough hope for the both of us when I lose mine, and willingly stands by me through all the rubbish you throw at me – I will win the war.   

Happy Mother’s Day to all the Mums out there, and an extra special wish to my darling Mummy Christine – you are by far the bestest Mumma in the world, and I love you to the edge of infinity and back again. 

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This is a picture of my stick - to prove that they don't need to be un-cool.  Hell, the super-awesome Dr. House has one!  You can find your own sexy stick at  Switchsticks' Australian site or a number of great online and in-store retailers.