by REBECCA WYATT
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 this 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. “Are you buying one for your mother for Mother’s Day?”
“No,” replied Mum, not batting an eyelid, “It’s for my 29-year old daughter.” The salesperson’s gaze shifted to me as she tried, quite unsuccessfully, to mask her horror and embarrassment. 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 (RA) 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 attempting to provide relief from the symptoms.
Rheumatoid Arthritis affects almost half a million Australians, with almost twice as many women affected as men. It causes chronic inflammation of the joints, but in addition can cause inflammation of the tissue around the joints, as well as in other organs in the body, including the eyes, mouth, lungs, heart, and blood vessels. The peak age group diagnosed with RA are women aged 18 to 35, which obliterates public perception that arthritis is a disease of “old people”. I have had a mix of good 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 a familiar mixture of curiosity and pity. Perhaps I’m not as psychologically-evolved as other RA patients, but I am incredibly self-conscious about the way my body has been ravaged by this disease and the drugs. It’s difficult not to notice the blackness of my eyes, after months of less-than-adequate sleep, which has inevitably led to bags 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 measurement 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, based on 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.
Rebecca is a pharmacist who moonlights as a professional patient. She does her best to break down the barriers surrounding chronic illness in young people.