TRANSCRIPT
"It got to a point of sometimes you would just sit there and cry, and I started to doubt myself. I lasted a few months before the treatment of being excluded got too much."
"Just really frustrated because it made me feel like I had no control level of my life. I can't get the kids up earlier. I can't drive. I can't make any of those things happen faster than they are."
In this bonus episode of 'Hysterical', we look at how women report experiences of discrimination and bias in the workplace when it comes to managing chronic pain conditions.
We take a particular look at flexible working-from-home arrangements as a means of managing chronic pain conditions.
The number of people working from home has increased substantially, particularly following the COVID pandemic.
Data from the Australian Bureau of Statistics shows about 40 per cent of people worked from home between September 2020 and June 2021; and just under 37 per cent of people in 2023.
Flexible working arrangements was what the majority of people cited as the main reason for working from home in 2023.
Despite the increasing normality of working from home, some women living with chronic pain have still encountered what they describe as discrimination as a result of this flexible working arrangement to manage chronic pain.
Jasmine, not her real name, suffers with various auto-immune conditions, particularly narcolepsy.
After Jasmine disclosed her narcolepsy to a new team leader in her previous local government role in regional Queensland at the end of last year, she started to notice a change in how she was treated.
"There was a definite negative shift towards me by that team leader after I disclosed and a sense of unhappiness from them about my ability to work from home. I lasted a few months before the treatment of being excluded got too much. So, things like being ignored in meetings, emails or suggestions, ignored important information or changes not communicated to me. Phone calls not returned and after a while it just was too much."
Jasmine felt defeated by the response she encountered, after contributing to the organisation for years, typically being rewarded for her hard work by receiving promotions and new opportunities across the government agency.
"It got to a point of sometimes you would just sit there and cry. And I started to doubt myself, which was then leading to little mistakes because I was triple checking everything that I was doing because I wasn't sure exactly what they wanted, and what they had changed, and what could I do. And it just sort of started snowballing. But I started to get really sensitive about every little thing and just sort of didn't want to become this bitter angry person because one person was excluding me or making me feel that my contribution wasn't important."
This experience forced Jasmine to quit and find a new role at a different government agency, after saying her concerns were ignored - despite attempting numerous conversations to raise the issue with her team leader of how they might better communicate.
“I didn't report the treatment higher up. I didn't want to disclose to the wider organisation and have that extra scrutiny on my capabilities or impact my ability to get the job done. So, pain is invisible. You get so used to being told it's in your head and that it's not real, that it makes you fearful and anxious. And I didn't want to expose myself to the potential for more discrimination. So, I think in the end, leaving the organisation was the right decision for me."
Researchers from Melbourne University and Western Sydney are working on a new report examining the relationship between working from home and evolving family and social relations, and wellbeing - which Jasmine was interviewed for.
Elisabetta Crovara is a postdoctoral research fellow at the University of Melbourne and is co-author of a submission made by the researchers to the Victorian women's pain inquiry.
During this research, which involved surveying 500 people across Australia, Dr Crovara says they stumbled across an unexpected finding, which prompted their submission to the pain inquiry.
"And although the survey wasn't specifically looking to hear from workers living with chronic pain, quite a number of respondents reported that working from home is crucial to managing their chronic health conditions. All of these people that they flag chronic health condition identified as women in the survey. So, between February and March, 2024, we interviewed eight of these women. And what emerged from the interviews were long histories of medical gender bias, misdiagnosis and having their pain dismissed by healthcare professionals, which ultimately also affected their career choices and experiences at work."
After interviewing 8 of the 12 women who reported working from home to manage their chronic pain, Dr Crovara says experiences of discrimination and stigma emerged.
She says some women described being overlooked for career opportunities, excluded from important decision processes, and even bullied as a result of their flexible working from home arrangements.
Dr Crovara says many of the women didn't disclose their condition to HR out of fear of being discriminated against.
"What emerged from these interviews is that working from home is still an exception. It's not normalised in workplaces and in organisations. And because of that, some of the women we spoke to experience a stigma for their working from home condition, even though working from home for them is absolutely crucial to manage their chronic pain conditions."
At least 3.2 million Australians are living with chronic pain, according to 2018 estimates from a Deloitte and Painaustralia report into the costs of pain in Australia.
More than half of those suffering are women and 68 per cent are of working age.
Chronic Pain Australia's 2024 report, which included those aged 18 years and older, found 3.6 million Australians live with chronic pain.
Fiona Hodson, vice chairperson of Chronic Pain Australia, says there is typically under-reporting of chronic pain as it encompasses many varying health conditions.
As a clinical nurse with over 20 years’ experience in chronic pain, she says people with chronic conditions have certainly shared encountering stigma and disbelief in their workplace.
She says this is the case for both men and women, as well as in the LGBTIQ+ community.
"The biggest one that keeps coming up time and time again is the stigma and not feeling believed by their coworkers. And that they do miss days of work because of their chronic pain, but they just don't feel like people actually understand them. There has also been some positives. There has been some workplaces that have actually introduced some workplace concessions for people. But again, in the report we find that a lot of people have actually had to reduce their work hours because of their inability to work their full capacity because of their chronic pain."
Chronic Pain Australia's 2024 report found that nearly half of women report stigma from health professionals regarding their chronic pain, and that women and non-binary respondents face even longer delays in diagnosis, with nearly half of women and almost 60 per cent of non-binary respondents waiting more than three years.
This aligns with evidence of health bias from Victoria's women's pain inquiry, as well as the federal End Gender Bias survey, which we explore in episode 2 of 'Hysterical'.
One in five people with chronic pain reported experiencing stigma from their employers or colleagues, while 44.9 per cent of survey respondents have had to stop working because of their pain and almost 30 per cent have had to limit their hours.
The report didn't specify whether women and gender diverse people encounter greater workplace discrimination than men as a result of chronic pain, but Ms Hodson says it's important to consider the higher levels of bias women and the LGBTIQ+ community experience in the health system.
"Your question around do women experience it more? My personal sort of anecdotal (experience) would be yes, there has been some notes that people around needing more time off for kids. Generally, a lot of the time women will take the time off work if their child is sick, but I can't definitely quantify that. But I would say that just with the overwhelming other barriers and the stigma; and the way that women feel that they're being dismissed and treated is... it would not surprise me if that translated into the workplace as well."
Ms Hodson says because it's also difficult to receive a classification of disability for many chronic pain conditions via the National Disability Insurance Scheme, workers fail to receive adequate legal protections and flexible work arrangements.
"I think if the community was educated enough and understanding enough to realise that this is just as much as a disability for many people; and that flexibility, work out some sort of criteria that can be supportive for everybody - because the majority of these people want to continue to work, but they just find it difficult doing their current jobs."
Lily, who is also using a pseudonym, says her chronic pain stems from a physical disability called hypertonia, as well as generalised hypermobility syndrome, which means she is unable to drive.
But she says despite management and senior colleagues being aware of her condition, she has still encountered pushback against flexible working arrangements as a result of her chronic pain.
"I did have a manager who would get annoyed at me pretty regularly that I couldn't get into the office before 9.30. In the end, she was so annoyed about it... What I did was I went through Google Maps and I printed out what times I could be at such and such; and that kind thing of what my commute actually looks like. And at that point, she was happier for me to do work from home and not get to the office before that time. Like there's no possible way that I could do that, but it really had to be spelled out before that stopped being a problem - because she thought that I was unprofessional up until that point."
The manager eventually became more reasonable with working from home adjustments, but Lily says she felt very frustrated by the efforts she had to make to prove she was telling the truth.
"Just really frustrated because it made me feel like I had no control over my life. I can't get the kids up earlier. I can't drive. I can't make any of those things happen faster than they are, as if I was unprofessional and unreasonable. And I mean, I have two master's degrees. I'm not someone who is not invested in my career. And I found this to be more of a problem in small businesses because they don't necessarily have the human resource knowledge."
She currently works as a project manager at a large company with reporting requirements for participation of female employees and people with a disability.
Lily says the HR team is also predominantly staffed by women, many of whom work from home and are mothers to small children.
She believes this flexible work culture is one that should be adopted in all workplaces.
"By not considering people with chronic pain - well, not actively doing that. But by having a rigid, we expect nine to five; and 40 hours (a week); you're really reducing the pool of people who you can consider as employees in the first place, and you're losing out on talent. The business case for diversity and inclusion is pretty clear. It's not news in any way, and so organisations who are thinking in an old-fashioned way, they're not going to get the best people. Not only is it bad for Australia because capable people are being held back, but it's bad for businesses because they're not... We're always hearing there's a skill shortage."
Dr Crovara says while the women noted a greater normalisation of working from home post the COVID pandemic, she says there is still inadequate policies in place to prevent bias and discrimination against those using flexible work arrangements to manage chronic pain.
"So, some of the women we spoke to, they said that before COVID-19, it was really hard to get flexible working arrangements and they had to go to the office. And they described those experiences as exhausting. They had to self-medicate, push through pain. Right now, there's not policy or a legislation very clear around working from home yet. So, it's very much in the hand of the organisation, of the single organisation to decide about their flexible working arrangements of working from home arrangements. What I can say is that flexible work and working from home is still very much treated as an exception or as a prize for workers."
A government spokesperson from the federal Department of Employment and Workplace Relations said in a response to SBS that the Albanese Government's Secure Jobs, Better Pay amendment to the Fair Work Act, provides eligible employees with an enforceable right to request flexible working arrangements, and also makes gender equality an objective of the Act.
The spokesperson says the Fair Work Commission is also considering a ‘working from home’ term in the Clerks Award, which covers employees who mainly carry out clerical and administrative work and their employers in the private sector.
The statement also noted that the Fair Work Act specifically prohibits an employer taking adverse action against an employee because of a protected attribute, such as a person's sex or physical or mental disability, including if they have exercised a right to request flexible working arrangements.
Dr Crovara says her research informed the recommendations included in the submission for the Victorian women's pain inquiry in July.
The inquiry is the first in Australia to examine women's pain with the final report due to be published in early 2025.
Dr Crovara says at its heart, the reform she is calling for is about a fairer and more equitable approach to flexible working arrangements for women with chronic pain.
"Working from home is hard. For example, it's hard to develop compassion in a remote work setting. So, I think one of the recommendations that we're giving is a further training for managers within organisations on how to lead teams remotely; and how to care remotely also for employees with needs and chronic health conditions. So not treating working from home as an exception or as a prize but normalise it as a right."
Jasmine says the current government agency she works for is ideal in its flexible approach - and shows how it can be done.
"So, before I started, I had a little bit of a conversation around I guess that flexibility is important to me, especially the workload can fluctuate. So having the ability to shift things around. So, we had that conversation from the beginning. I was a little bit nervous, but to date, it's just been, again, that trust of you're just getting the work done and you're just moving forward. And if I've got any appointments, I just block that time out in my calendar. Hasn't been an issue at all. It's just been fantastic to have that trust as soon as you start of, okay, we're all adults, let's just get on with it. That feeling of appreciation of the work that you are doing, means so much after that bad experience."
She hopes workplaces across the country can adopt a fairer approach for those living with chronic pain.
"So having that open, just having that open culture where it's okay to speak up. I guess if you do have people who work from home, just checking in with them, picking up the phone sometimes just helping them feel included - and especially part of a team. So just having those things in place of how can that person feel included, it's so important. I wouldn't be in the workplace - and contributing without this work-from-home arrangement. So, I really hope that it does continue and that is supported by organisations across the country."
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