The cost of work for the chronically ill

When Ainslee Hooper typed up her resignation email and pressed send, her boss rang with a somewhat bruising and unexpected reply.

“I emailed them saying I’m resigning. I got a phone call and told them I was starting my own business, and they said, ‘that’s fantastic, would you like to say goodbye to everybody’,” Hooper said, recalling the conversation from January 2019.

“Here’s the kicker; before I’d even had a chance to answer, they’re like ‘Oh, that’s okay, we’ll send you out your things. Good luck, bye’”.

Hooper had sat with the idea of resigning for months, almost 12 to be exact. She had taken personal leave after suffering a nervous breakdown. She’d battled extended periods of poor health stemming from a disability, chronic illness and work stress. ‘

After chatting with friends and family, Hooper decided to leave the company she’d worked at for 20 years and go out on her own. It would set her on a path to help others struggling with chronic illness and disability in the workplace.

For legal reasons, Hooper is unable to reveal where she previously worked. She experienced six good years at the company with a series of bad years, where, she claims, her chronic illness was used against.

“I have a disability, I was born with a disability, so I’ve always had times in hospital where my body decides it wants to crap out on me,” Hooper, an applied anthropologist who runs her own disability inclusion consultancy, said.

Hooper recalled how one of her team leaders once told her she was an outlier in the group because of her sick day count.

“They were always like ‘how can we get this lower?’ and I was like ‘well, you can’t’,” she said. “It was kind of like they expected you to plan these things. Like you know that you’ve got a disability, you know that things are going to crop up unexpectedly, but you can’t plan for it.”

Ainslee-Hooper photographed by Donna Indie-Lane

Incredibly, Hooper claimed she was asked what she was doing to look after her health.

“It’s just like ‘wow, excuse me, these are things that happen. You really have no idea what’s going on’,” Hooper reflected.

Chrissy Symeonakis was an event manager, working “60-plus hours a week”, for a multi-million-dollar hospitality company when her health suddenly faltered.

“I was very much always on call. Basically it was like I was chained to my desk,” Symeonakis told FW. “I had a team but I wasn’t able to grow my team. There was just an expectation that, you know, you could have a pay rise because you’re doing such a great job, but we’re not going to give you any more staff members.”

One morning, after a shower, she experienced what she describes as a snowstorm or white out in one of her eyes. Symeonakis phoned her manager who urged her to go straight to hospital, fearing a possible stroke.

“They did all these tests and I had MRIs and they gave me a diagnosis of Multiple Sclerosis (MS). The vision issues are called optic neuritis and the treatment is to give you steroids to help clear it up,” she said.

“But in my instance, my optic nerve actually demyelinated, meaning my vision loss was permanent.”

It proved an emotional personal blow for Symeonakis who had just turned 30. Her shock diagnosis, a form of MS called relapsing and remitting, also caused friction at work.

“It took me a long time to realise that the life that I had back then doesn’t exist anymore and striving to get that life back actually wasn’t a healthy thing to do.”

“I had all these appointments that I needed to navigate and go and see doctors and specialists and I was told point blank by my employers at the time that I needed to make the time up for the appointments, even though I was already exceeding my work time,” she said.

“Stress is your biggest contributor (with MS). So what will happen is like the body will get over flooded by cortisol and then it can cause a relapse. Relapse is like new symptoms for me. My mental health was terrible. I was suicidal and my neurologist at the time said to me that if I don’t make some extreme changes, like being workplace, that I would fast track my disease.”

With just two weeks annual leave up her sleeve, Symeonakis quit her job. She was fortunate her hardworking reputation in the industry followed her giving her the opportunity to open her own creative consultancy.

Sadly, neither Hooper or Symeonakis are alone in their workplace experiences.

Research from Chronic Pain Australia’s 2022 national survey found cost to be the most significant barrier to accessing medical help. Specifically, 75 percent of survey respondents said that cost prevented them from accessing health professional services or specialists.

In response to how much they were spending on medical specialists, 52 per cent said they were spending at least $200 per month. More than half of those surveyed, 55 per cent, also admitted to not being able to afford other health related services in the past 12 months.

“I think there’s still potentially that bias towards invisible illness and people not necessarily understanding the impact it has on people to live with pain and the flow on effect that that has,” said Kathie Elliott-Scott, a board member with Chronic Pain Australia who also manages her own chronic pain.

“I think the biggest issue is for health professionals to understand what people need in terms of managing chronic illnesses, or chronic pain or invisible illnesses because then that empowers, I guess, the individual to advocate for their needs with their employer.”

Chrissy Symeonakis

Elliott-Scott, who also works three-days a week as Director of Partnerships and Philanthropy for QMusic, as well as a not for profit strategic consultant in her own business Square Pegs Consulting, said it was important to understand change takes time.

“Organisations like Chronic Pain Australia and other groups are very, very needed to get people to that point where they feel that they can individually advocate,” she said. “I think it’s unrealistic to expect a quick change. I think with anything it takes time, and it takes and it takes a concerted effort from all parties to get that message through.”

Joanne Swadling understands self-advocacy. When she was 24 she was diagnosed with Chronic Fatigue Syndrome.

“I was living in Sydney and having a great time. Then in my twenties I got food poisoning and I kind of recovered from it. But about five or six months later, it just kind of came around and hit me again,” Swadling said.

It was a sudden and brutal change to her life. Swadling’s illness forced her to move back in with her parents on the NSW Central Coast. It would take three years before she was given a diagnosis. During those years, rather than wallow, she planned for her recovery.

“I thought I just need to rest and then like, my body is going to magically recover. So to keep myself amused I bought a sewing machine or overlocker and I started to make clothes. I started to make business suits and all kinds of stuff, thinking ‘right, I’ve got to be ready, when I get back I’m going to be the best dressed in the office’,” she said.

“It took me a long time to realise that the life that I had back then doesn’t exist anymore and striving to get that life back actually wasn’t a healthy thing to do.”

Figures from the Australian Bureau of Statistic show women in Australia are more likely than men to experience physical pain that impacts on their ability to work. In fact, 73.9 per cent of women aged 18 years experienced bodily pain compared to 68.2 percent of men, while 63.2 percent of women aged 18-24 years experienced bodily pain compared to 47.8 percent of men.

“I didn’t want to tell anyone at work at all. I’d just got a promotion. I was 22 and everything was really exciting. I didn’t want to ruin my plans.”

The research also found, 66.1 percent of women aged 18 years and over experienced interference with work compared to 58.4 percent of men.

Swadling soon switched focus, using her time to learn web design. She created a website where she blogged about her chronic fatigue and shared other people’s stories. Soon she set herself up with a business making websites.

One of her clients was a clothing company that was making around $200,000 a month in sales. It gave Swadling an idea.

“I was trying to figure out a way to build a business I can run within my limitations, because even now I can’t work full time,” the now 53-year-old said.

In April 2009, with a carton of fabric softener and a bookshelf in the spare room of her then rental property she founded natural products company, Shop Naturally.

“I bought our house in 12 months, (the business) got to the point where it was too large to run from our house and I rented a warehouse and took the leap and kept going at it. It would definitely be a lot bigger now and I would be a lot more successful now if I was actually healthy while I was doing it,” she said.

“So it has limited me a lot, but it didn’t stop me from doing something, it just stopped me from reaching my complete potential.”

Teisha Rose was in her twenties, moving up the ranks at Telstra when she noticed an unfamiliar tingling feeling in her legs that moved up her torso. She visited a physiotherapist who flagged something wasn’t right.

“I didn’t want to tell anyone at work at all. I’d just got a promotion. I was 22 and everything was really exciting. I didn’t want to ruin my plans,” Rose said.

“But keeping it secret was difficult especially when I started experiencing symptoms. I was scared to let on, so my life was pretty miserable.”

It was one day during a work presentation that her symptoms worsened. It left her with no choice but to share her diagnosis with work colleagues.

“Telstra were fantastic. I mean back then there wasn’t as many options, like work from home and all, but they were very supportive and it worked out okay,” she said.

“I’d go to hospital for treatment, come out and rush back to work until the next time my life stopped. But they were great. That was more me, that was me not wanting MS to win. It was like no, you’re not going to stop me, stop my career as opposed to Telstra.”

Rose’s health eventually won out. After one lengthy hospital stay, where she had to relearn to walk, Rose made the call to put her health ahead of any job. Fate stepped in.

“As I got fed up I thought ‘no, I’m going to resign’ but the irony is the day I decided I was going to resign they called everyone in and said they were offering redundancy packages. And I thought ‘are you serious? So good’,” she said.

“And the manager came up to me, I knew he was going to offer me another position and I said ‘no thanks’.”

“From my experience, there is such a lack of awareness… a person without a disability will get ill, and they’ll get over it. It doesn’t work like that for everybody, and people need to understand that.”

Rose used the money to travel overseas, where she lived and worked in Edinburgh. The time away saw her health improve.

When she returned to Australia following the 2001 September 11 attacks in the US she retrained as a social worker, though MS relapses cut short her new career path.

Frustrated at losing her potential to illness, she wrote a book about her experience. Her health took a turn again in 2022 when she was diagnosed with breast cancer. Two weeks later scans confirmed it had already spread. It was stage 4 breast cancer.

Despite the cards she’s been dealt, Rose remains philosophical.

“(MS) made me very proactive, ensuring my career choices align with my life priorities. So I think that’s a good thing,” she said.

“It also gives you a bit more confidence to, for example, take a package. If you’re alone in a hospital bed, I’m going to go instead of thinking, maybe I shouldn’t…. I think it does give you a bit of freedom to do things differently.”

It’s now almost four years since Hooper quit her job and started her own consultancy. She works with companies to improve their disability inclusion strategies to create psychologically safe work environments.

“It comes down to training, like awareness. From my experience, there is such a lack of awareness… a person without a disability will get ill, and they’ll get over it. It doesn’t work like that for everybody, and people need to understand that,” Hooper said.

“The one-on-one conversations should only be had if there has been training because the one-on-one conversations can lead to such inappropriate stuff and make the staff uncomfortable. I knew nothing about psychological safety or anything like that until I started my business and started to talk to other people in the same area.”

The term psychological safety resonates deeply with Symeonakis. She has created a safe work environment, yet said, wider change is needed for others with chronic illness to feel comfortable at work.

“What happens to you as a human is you’re scared to talk up or you push on days where you’re having a flare up because you don’t want to make a big fuss. I do it. I don’t want to always be that person who’s complaining about their chronic illness,” she said.

“But I think we need to complain… share your story then there’s less of a stigma around chronic illness.”

If you or someone you know needs immediate or mental health-related support, contact Lifeline on 13 11 14 or via lifeline.org.au. In an emergency, call 000.