Monika

Monika has multiple chemical sensitivity (MCS), also known as chemical intolerance and chemical hypersensitivity.

‘So almost anything you can think of that is man-made, people are wearing, using, washing their hair with, washing their clothes with – all of those things are like kryptonite to my body, so I can't go anywhere near them.’

She experienced the first symptoms in her early 30s, when she had a strong response to a work colleague’s perfume. A decade later, her sensitivities have become so extreme she is hardly able to leave the house.

When Monika first became aware of her disability, she was working in a government office. She approached her manager to ask for some measures to be put in place so her sensitives weren’t triggered.

‘I don't know if you know spearfishing, and it's like – that's what it felt like. It felt like someone put a spearfishing prod right into my brain, like it was just so painful and I couldn't concentrate so it was really, really impacting.’

She hoped a solution could be found that would allow her to ‘work and feel healthy and just get [her] job done without being in dramatic pain all the time’.

But what eventuated was years of workplace bullying.

The colleague didn’t want to accommodate Monika’s needs. Over time the Occupational Health and Safety team became uncooperative too, and refused to acknowledge Monika’s disability unless she got an official diagnosis from her GP.

‘It's becoming more known now, my disability. But back then people just acted like there was just some problem with me, not that I was actually experiencing a disability and the symptoms of it.’

In the mid-2010s, Monika accepted a secondment to another role. All went well in this workplace, where her manager made adjustments for her. Monika’s GP formally diagnosed her with MCS and a specialist confirmed it. The specialist also told Monika that the condition is a disability that is covered by the Disability Discrimination Act.

Returning to her previous workplace, Monika let her managers know that she now had a diagnosis of a formally recognised disability.

‘They refused to develop a … policy and unfortunately, which I've found a lot, … is that when people find out that I have this disability, there are people who will go out of their way to bring things to me that make me sick.’

‘Like, literally coming out of their way to let me know that they haven’t accommodated my disability.’

It was ‘really challenging’, Monika said. ‘I noticed a very quick decline in my health.’

Monika continued to press for adjustments and her managers continued to resist. At one meeting, a manager said to her ‘Why don't you go work somewhere else?’

‘It was a really horrible thing for her to say,’ Monika told the Royal Commission.

Monika devised a work-from-home plan hoping to circumvent issues that way. She received permission to do so for a few hours a day, an arrangement that wasn’t practical.

‘I never received a reason as to why I was unable to work from home – just, “We don't do that.” There was never any sound, like, rationale behind it as opposed to “No”. That was it. That's all I ever got.’

The relationship between Monika and her managers deteriorated, as did Monika’s health. She took long periods of unpaid leave. Her role was filled by someone else, her records were lost and many of her workplace rights were contravened.

Monika filed a complaint with a human rights commission which was resolved by conciliation. Monika feels she capitulated, which she regrets.

She has left her role and recently set up her own business. It’s ‘slow at the minute’, she said. But she’s positive about reaching the ‘end of a big long chapter’.

‘It’s all blue skies from here after today.’