TRANSCRIPT
"When I was extremely unwell, chronic pain was, it was a day-to-day occurrence. It was extremely high. Some days where it would be a 10 out of 10 of a pain ratio, some days might only be a six or a seven. But when the pain was there, the pain was there."
Mathew Boyd-Skinner lives with Crohn's disease, a chronic illness that causes inflammation of the digestive tract, and his symptoms include extreme fatigue and abdominal pain.
While he now works as a barista at a mobile coffee van, Mr Boyd-Skinner says finding a workplace that understands his condition and symptoms has been difficult.
"So I have worked in some previous places that haven't been so supportive of my Crohn's disease, which made it extremely hard to work there. I was a manager at the time so obviously had a lot more duties, but the support just wasn't there."
Mr Boyd-Skinner says because his disease is not visible, his last workplace treated him as though it did not exist.
He says he experienced a lack of care and support, which eventually led him to leaving the job.
"I believe there wasn't an understanding of the condition, so that definitely made quite an impact whilst working there. Mainly mentally. Just a quick are you ok, or check in or someone to have an understanding of my condition."
According to a new study from a patient welfare advocacy group, many Australians have been in a similar position.
The Working Well Report finds one in three workers living with a chronic health condition have felt forced to leave a job because of their condition.
Diedre Mackechnie is the Executive Officer of the Australian Patient Advocacy Alliance.
She says in many cases of chronic illness, even day-to-day work-place situations can be highly uncomfortable.
"It can be simple things like their desk is a bit far from the toilet or there are issues that they can experience that make it a bit difficult to be in the workplace and so often this ends up in them leaving."
The report suggests fear of discrimination is also preventing people from disclosing their condition.
Ms Mackechnie says many workers avoid asking for additional sick days or flexible hours because of fear of dismissal.
"A lot of the time they actually don't even declare their chronic condition because they're actually concerned about any sort of bias or discrimination that they might experience, so they will keep their condition hidden."
The most common chronic condition in the workplace is back pain, followed by mental health concerns, asthma, arthritis and diabetes.
Ms Mackechnie say employers could be making simple changes to ensure all staff can work at their full potential.
"It can be very minor adjustments, can make all the difference and actually enable that person to continue to work, which from an employer perspective is fantastic. They retain their employee, but even from a wider societal perspective, it's great that person stays employed, doesn't have to access government benefits when they would really rather be working."
Chronic pain expert Joshua Pate says it's important to recognise these conditions are not only affecting adults.
"The latest review of the evidence of how many children are facing chronic pain showed that there's about five children in every classroom across the childhood spectrum who are facing these challenges. That number is kind of bigger than we expect, and I guess it points to how invisible this is and how much people are hiding these challenges."
Mr Pate works to build education and understanding around chronic conditions in the classroom, and he says it's having significant positive impacts.
"One of the things that was really exciting, like a principal fed back to us that there was more empathy in the playground. So even the kids who don't have the challenges of chronic pain, they're able to be more empathetic. The learning is kind of driving the empathy."
From the playground to the workplace, empathy has also made a huge impact on Mr Boyd-Skinner's experience of living and working with a chronic condition.
"I work for two amazing people. They're just so understanding of my condition and it makes it so much easier for me wanting to come to work."
