When women share their experiences of living with chronic pain, they are often met with judgement or a lack of understanding. Giulia Jones, CEO of Pain Australia, is working to change this.
The next time someone at a barbeque or in a workplace decides to share that they live with chronic pain, Jones wants the conversation to be met with supportive curiosity, where people ask ‘how do you manage that?’ or ‘What treatments do you use, and how do they work for you?’.
Having personal experience with chronic health issues, Jones was diagnosed with breast cancer last year and says her biggest challenge was working through her treatment – something she did out of both choice and necessity.
“There were some really hard days there,” Jones tells Women’s Agenda. “Like running a rally for women’s chronic pain on the lawns of the federal parliament in the middle of my six months of chemotherapy.”
“But it was worth it, we have elevated this issue for women all over Australia and have seen it now a topic of discussion in the national parliament, the Today Show, and major Australian newspapers.”
It’s a far-reaching issue that encompasses more than one type of pain, she says, including pelvic pain, complex regional pain syndrome, muscular skeletal and nerve injury and damage, migraine and much more. Jones will be sharing more on the topic as a speaker the 2024 Women’s Health and Wellbeing Summit hosted by Women’s Agenda on September 4.
“We need the community to actually see and be aware of and respectful of women living with [chronic pain] instead of discounting and dismissing women’s pain,” she says.
Jones has broad experience working within this health conversation. Along with her position as a not-for-profit leader, she’s also been ACT Shadow Health Minister, Deputy Leader of the Opposition and worked with trade unions, board directorship, media advisory, and federal and state policy development.
Over the course of her career thus far, Jones says her passion for women’s health has only increased.
“I have always been a strong fighter for women and their aspirations in our society, but I also have learned that there are some pretty basic things we have not achieved yet that when I was younger, I probably thought were done and dusted,” she says.
An example of this was when Jones was breast pumping while working in the ACT Parliament. There was no lock on the door and anyone could have just walked in on her, but when she asked for a lock on the door, she was told it was a safety risk.
“I was so angry. And less than 10 years later I fixed this problem as the Shadow Minister for Women in all the breastfeeding rooms in all ACT government buildings. But why was it still an issue, because it’s these fine details that really matter to women, and we are still fighting to get them all done,” Jones says.
“It’s a slow business and we have to persist as frustrating as it is.”
Another fight she won was advocating for government-owned portaloos to be deployed for women firefighters who were stopping bushfires. Jones says these portaloos had just been “sitting in a shed” and it was as if the women’s “period and privacy needs were invisible”.
Regarding women’s health and wellbeing overall, Jones says “we have to fight for ourselves– for space, time and funds”.
“Sometimes it’s just a fight we each have to wage. For exercise, training, clinical guidance and to take control of as much of our health as we can, it is a constant effort we have to embrace.”
Jones has six kids, and while she fights for their health and wellbeing, she’s also learned that taking care of herself is equally important.
“I am as important as them,” she says, adding that this “sounds simple, but for a lot of us it’s not natural to give our needs a place too.”
“Whether it’s physical pain, mental health, time to unwind– it’s ok to respect and care for yourself too.”
“I think that is going to always be an important message for the women of any community because we naturally think of others and that’s not a flaw it’s a strength, but at the same time we need to fight for ourselves and thank ourselves for all we do every day.”
Giulia Jones will be speaking at our 2024 Women’s Health and Wellbeing Summit in Sydney on September 4. Get your tickets here.