When Sonya's dad died, she developed a tremor in her hand. It was the start of a lifelong health battle.

This is an edited extract from Tremor, A Movement Disorder in a Disordered World by Sonya Voumard, published by Finlay Lloyd, RRP$24.00 out now.

Sonya Voumard was in her early teens when her father died suddenly. Very soon afterwards she noticed a slight shake in her hand. Later she was diagnosed with dystonia. In this chapter of her book, she describes the challenge of managing this condition at work…

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A senior colleague takes me to lunch to celebrate my recent promotion. But, as my hands are shaking when the food arrives, I worry it will be too reputation-damaging for her to see me trying to eat.

I tell her I feel unwell. What I really feel is awful for having to conceal why I've left untouched the expensive food she paid for. As we walk back to the office together, me thanking her profusely, things are awkward.

Sometimes, at times like that, you can tough it out. Get the first mouthful in and a rhythm might build where you can minimise the tremor, or at least its visibility. But one-on-one lunches with people you scarcely know are the hardest. There are times, like that one, when I've felt as though they've cost me my professional credibility, although I can never be sure. As a fellow dystonia sufferer once said to me, 'Holding a cup with two hands is not a power look.' Another struck a chord with me when she said people perceived her as secretive due, perhaps, to the many small avoidant adjustments sufferers make to disguise the condition. So often I'd found myself at restaurants with work people, shaking so much I had to make excuses about why I couldn't eat the food I'd just ordered. Antibiotics, stomach bug, not hungry when I was ravenous. If they saw me shaking, it would get worse and I'd be unable to pick up my food without dropping it. I rarely did it, but telling people I had an essential tremor, which I'd then thought it was, never seemed to satisfy them. It was as if they hungered for something more tabloid, more sensational.

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'What's your real secret?' That was the subtext. Better to hide the symptoms or avoid situations where they were on show. Letting it all hang out is not a good corporate play. I've gleaned that much from seeing people who take that risk being cruelly labelled in the back channels where candid conversations happen and where sweet talk of diversity and inclusion is swept aside as people share what they really think about another's perceived weakness.

While my natural defence mechanisms do prompt me to edit or disguise the errors my body makes, it's a losing game that I've learned to worry about less with age. I pride myself on not caring too much what people think of me. My sense of self came early and from a strong and close family. I had parents who embraced me as a different kind of kid, and I liked that about myself. While they believed pragmatically in being able to make truck with the mainstream, fitting in when you had to, our family culture was overwhelmingly irreverent and eschewed conservatism. But, in the corporate world, where I've worked with many—though, importantly, not all— people whose values I don't share, I've witnessed many shallow judgements from people who put profits before humans and for whom empathy or compassion might be seen as weaknesses, or, to borrow that favourite corporate term, 'nice to haves'. I accepted that my salary (and material wellbeing) depended on surviving in a jungle where any form of perceived vulnerability could be preyed upon. So, I disguised my shaking whenever I could.

Once, while I was travelling home on a bus on Sydney's New South Head Road from stand-up paddle boarding at Rose Bay, a teenager with Down syndrome got on at Edgecliff Station. He sat between me and a fellow passenger, an older woman. The kid was friendly, chatty, excited, asked me what I did for a job. I told him I was a writer.

'Will you write my story?' he asked. He then turned to the older woman and said, 'Excuse me, you've got lipstick on your face.'

She smiled, took a tissue out, wiped where he pointed and put it back in where she'd got it from. 'It's still there,' he said.

The woman, unsuccessfully, repeated the action. 'No, still there,' said the kid.

She remained gracious and warm as he persisted, trying to be helpful, urging her to wipe the spot twice more, which she did. He wanted that lipstick stain gone. By then, we all did. It remained stubborn.

Finally, the woman said, 'It'll just have to stay there.'

And we all turned our attention away. But something about those moments on that bus trip stayed with me. I felt sad for the woman and the boy who were caught up in an emotionally confusing tangle of the usual awkward questioning and gaze around disability and expected standards of appearance.

This is an edited extract from Tremor, A Movement Disorder in a Disordered World by Sonya Voumard, published by Finlay Lloyd, RRP$24.00 out now.

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