health

"One month into my ballet career, what I thought was an 'old people's disease' stole my dream."

When you think arthritis, what comes to mind? Old, grey people with gnarly joints and a stooped back, perhaps? Fair. How about 19-year-old professional ballerinas? Not so much.

I was diagnosed with rheumatoid arthritis (RA) when I was 19 years old, one month after my ballet career started. Unlike osteoarthritis, which tends to develop with age and use, rheumatoid arthritis is an auto-immune disease, causing pain, inflammation and erosion of the joints, as well as persistent, ongoing fatigue.

In people with RA, the immune system recognises the lining of the joints as ‘foreign’, and attacks it, causing the joints to swell painfully and stiffen up. Treatment varies from painkillers to steroids to ‘disease modifying drugs’, which can, at best, control the disease, but not cure it.

Upon diagnosis of RA, my career was stalled, I was treated, and I slowly and painfully regained my health. One year later, I got back onto the ballet studio, re-trained, and ended up back on stage. My dream, which had come true once and was seemingly stolen, was realised for the second time. I managed the disease through high doses of a very effective immunosuppressant drug, anti-inflammatories and painkillers.

what is rheumatoid arthritis
(Image: iStock)
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Four years later, it all ended – my joints couldn’t stand the very significant pressure put on them by this level of activity, and so with a heavy heart and a frightened head I ‘retired’ at age 25. I spent the next five years studying and pretending to be a ‘normal’ person – one who hadn’t spent her life in the confines of ballet studios and theatres; one who wasn’t constantly in some form of pain. On the latter I fooled people quite well – on the former less so.

Part of what allowed me to fool people was that I was well trained, thanks to my career, to hide weakness. I was also very used to physical pain; indeed, to me, pain signalled success, achievement, work, grit and perfection. And so pain was, and is, a normal part of my life.

Listen: Mia Freedman talks to her cousin, Slyvia about how chronic pain has shaped her life (post continues after audio...)

Each day I take between four and eight pills. Once a fortnight I inject a biological drug which suppresses the process of inflammation. Once a week a take an immunosuppressant that makes me feel nauseous and exhausted, makes my hair fall out and gives me sores in my mouth.

Consequently, I have pain that is present but manageable, and am able to work three days a week, mother an energetic 14 month old boy and do a weekly modified pilates class.

I cope with my disease by refusing to identify with it. I have worn this refusal as a badge of honour for the last 13 years: a secret smugness lies within as I hide my pill box, hide my injections, hide my sick days and hide my limping. In honesty, what I really do is hide from the truth.

"Part of what allowed me to fool people was that I was well trained, thanks to my career, to hide weakness." (Image: iStock)

I’m wondering what the point of writing all of this down is, and I think it is simply this: to ‘unhide’. To give my disease some recognition, to give others an understanding of what it means to live with this condition, and ultimately, to give myself permission to have it. I have never identified as someone with RA, lest I then have to accept it. But fighting acceptance of the truth, I’ve come to realise, is far more tiring than just allowing it to be.

This post was submitted to highlight Arthritis Awareness Week (28 May- 3 June 2017).

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