Victorian Police and Water Minister Lisa Neville shares her journey with Crohn’s disease
In the lead up to this year’s World IBD Awareness Day on 19 May, Victoria’s Minister for Police and Water, the Honourable Lisa Neville, has shared her thoughts on living with Crohn’s disease.
Minister Neville was diagnosed with Crohn’s in 1988 and as a young woman found it difficult to come to terms with, especially given the consequences when not managed well, or during a flare up.
“It’s taken many years to understand the effect Crohn’s can have on different parts of my body – I’ve seen the impacts in my skin and my eyes and I’m constantly vigilant for the potential of abscesses and fistulas as these can cause significant pain.
“I recall one of the hardest times I went through was developing a liver abscess during my pregnancy. It wasn’t something I was prepared for – I couldn’t possibly have imagined it before it happened.
“It’s taken me a long time to really understand the breadth of the various symptoms that can occur. Thankfully, I know now how important it is to identify risks early to prevent a flare up and how to best manage my day with treatment and medication,” Minister Neville said.
Now 34 years since she was first diagnosed, Minister Neville is grateful there are much better treatments for those living with IBD – not just a reliance on steroids – and a better understanding from the medical profession of the disease.
“But there is still stigma around the disease and a lack of understanding that can make the journey harder. For many years I shared that I had Crohn’s with only a few people and relied on my specialist and immediate family to manage it quietly, which was not always easy. To most, I kept it a secret – seeing it as a weakness.
“This was of course a mistake and meant that I didn’t get the support I need. Since sharing my condition more broadly in recent years, the burden of Crohn’s has lightened significantly. It’s made my work life easier to navigate – when and why I need time off, or to leave an event suddenly or slow down a bit,” she said.
Through her journey with Crohn’s, Minister Neville has realised how important good support and services are in living fearlessly and not feeling alone with her disease – something that Crohn’s & Colitis Australia (CCA) has provided for many years.
“CCA is not only a trusted source of up-to-date information on Crohn’s and colitis, but also provides opportunities to build support networks and help others understand the impacts of the disease,” she said.
World IBD Awareness Day is a timely reminder that the more than 100,000 Australians living with Crohn’s disease or ulcerative colitis need continued support to improve their quality of life.
World IBD Awareness Day falls during Crohn’s and Colitis Awareness Month, which offers an opportunity for people living with Crohn’s or ulcerative colitis to courageously speak up and remove the stigma around IBD to increase the public’s understanding. While most people are diagnosed with IBD between the ages of 14 and 25, it can affect anyone at any stage of life – this year’s theme for World IBD Day is #IBDHasNoAge.
To further put a spotlight on this illness, a number of buildings and landmarks around the country will be lighting up purple on 19 May. You can see the list of sites here.
With the generous support of their sponsors Janssen, Pfizer, Dr Falk, Takeda, Celltrion Healthcare and Abbvie, CCA hopes this awareness month is a chance to band together, start conversations about IBD and spread awareness and understanding of Crohn’s and colitis. Those living with these diseases can get involved with CCA’s ‘You’ve Got Guts’ campaign by sharing their brave stories and comments on social platforms to #flushthestigma.
Anyone diagnosed with Crohn’s or colitis can join CCA, a community that understands. To learn more, visit https://www.crohnsandcolitis.org.au/ or call 1800 138 029.