My friend – I’ll call her Jane – was at the bottom of the driveway as I was leaving to take the dogs out one day. She’d just pulled up.
‘It’s time,’ she said, climbing out of her 4WD and crossing the road. ‘Some people know, and some people think they know, and there’s all kinds of Chinese whispers going on. It’s time to lay it on the table.’
It, of course was her multiple sclerosis. Jane had been taking a fair bit of time off due to frequent, severe relapses. And even when she was at work it was hard, dealing with fatigue, pain and mobility issues. She had decided to arrange a workplace meeting to explain her situation and address any concerns they may have. And she asked me to be a support person on the day.
So there we were, one Wednesday just after lunch, in a big conference room. Jane and I and a couple of others she’d invited to support her were sitting at the front under a video screen, and Jane’s co-workers, about 20 of them, were seated facing us, looking expectant. I’d never done anything like this before and didn’t know what to expect.
Jane showed a short DVD first. ‘I’m not good at speaking,’ she’d told me. ‘So I’ll let this do it for me.’ It was pretty informative but got through a heap of information really fast – too fast for me to keep up, and I’m meant to already know this stuff. So I wasn’t surprised, when Jane invited questions, that there was a barrage of them.
‘What causes MS?’
‘Is there a cure?’
‘Is it painful?’
And so on. Some she handballed to me. And just as I was about to ask Jane a question myself, that very question came from a woman in the back row.
‘Jane, what can we do to help?’
It was heartfelt and many others nodded. But it’s a hard one to answer.
Everyone’s different. Some people want lots of support; they want to know that people are watching out for them, that they care. Others would prefer to leave MS out of the picture, thanks, if possible. As in, ‘I’ll let you know if or when I need help.’ Jane opted for the latter option, and I could see why.
Not everyone wants to be as upfront as Jane at work. Another friend of mine left her previous job because everyone always pinned every little lapse on her part to her MS. It seemed to her that once they all knew about the MS, that’s all they could see. She has only told two colleagues at her new workplace, and they are sworn to secrecy – she has no visible symptoms so that’s possible.
But me, I’m self-employed – have been since I was diagnosed 17 years ago. I work at home, on my own. On the plus side, I don’t have to explain anything to anyone. But on the minus side, if I drop the ball, there’s no-one there to pick it up.
Jane’s skills are in the community sector – no sitting at home behind a computer for her. And she certainly can’t hide her condition. But she was relieved, after the meeting, to have opened the discussion. There was a real warmth in the room – one of her colleagues broke down in tears – and I could tell she was going to have a lot of support from here on.
On the way out I told one woman, ‘It’s almost enough to make me want a job with co-workers.’
‘Almost?’ she said.
‘Almost.’ I can’t imagine being expected to turn up at an office, or anywhere, at 9am Monday to Friday. Even a few days a week. I’ll stick with my (very) small home business with its flexible hours and short walk to the kitchen – or the couch. With its random work volumes and unreliable returns.
But Jane’s working life will be just a little easier from now on, and it was a privilege to have been there on the day.