A lung disease diagnosis can be a scary thing, not least because of the many misunderstandings about the condition. The stigma surrounding lung disease even means many people hide their diagnosis from their family and friends, which can lead to feelings of isolation and loneliness.
That was the case for Bill van Nierop, 66, who was diagnosed with idiopathic pulmonary fibrosis (IPF) — a rare, incurable type of lung disease that results in scarring of the lungs and makes it hard to breathe — in March 2015. He quickly found there was a lack of community awareness of IPF and other lung diseases, despite the fact that about 1,250 Australians are diagnosed with IPF each year.
Bill had been experiencing breathlessness for some time, but at 61, he put the change down to ageing. It wasn’t until he had a routine X-ray after battling pneumonia that his doctors discovered he had IPF.
“[The diagnosis] kind of sent a shiver through me,” he says. “I had a sister who lost a battle with interstitial lung disease (ILD), but we suspected later that it was IPF that she had.”
Bill says that despite being a non-smoker, he encountered some prejudice from people who learnt of his condition – a common problem for people with lung disease, who find even friends and family think they’re somehow to blame for their condition because of the well-known connection between lung disease and smoking. Stung by the reactions he encountered, Bill says he withdrew.
“I decided just to fight this on my own,” he recalls. “For probably six months, I didn’t talk about it.”
He says that he received little support from medical professionals at the time he was diagnosed either, even after being told he could have just three to five years to live (a prognosis he’s since beaten), leaving him to come to terms with these distressing statistics on his own.
“Early on there wasn’t a lot of support, to be honest… even from clinicians,” he says. “I discovered very quickly there was little information … so it was quite a challenging time.”
But a Google search changed all that for Bill, who found the Lung Foundation Australia.
Bill says that with the help of the Lung Foundation Australia, he’s since built a small support network and taken on a number of charity challenges, including completing in 2017 The Long Walk for Lungs, a 15-day, 700-kilometre fundraising walk across central New South Wales that raised more than $100,000 to support Australians living with lung disease. A year later, he finished The Long Kayak for Lungs, a 42-day, 2,200-km kayaking journey along the Murray River that raised a further $90,000.
He also regularly talks to community groups about his experience of living with lung disease. “I think it’s sad that a lot of people aren’t referred to the Lung Foundation,” he says. “It’s the only organisation in Australia that supports people with lung disease and their carers.”
The Lung Foundation Australia runs a number of peer support groups for people who live with a lung condition or look after a loved one who does. Lung Foundation Australia’s Peer Support Coordinator Chanelle Moar says these groups can become an integral part of life, whether a person is newly diagnosed or has been living with a lung condition for many years.
“Living with lung disease or lung cancer, particularly a rare condition like Bill’s, can be very isolating, even at the best of times,” she tells Starts at 60. “The unique challenges of living with a rare condition don’t go away at a time like this. While your friends and family are caring and supportive, it can feel like no one really understands how you feel.
“Connecting with someone who has the same condition, someone who understands what you are going through, can make all the difference. It’s a great way for people to learn from each other by sharing experiences, and knowledge about programs and services.”
Moar adds that peer support can be accessed in multiple ways, to ensure there are connections however a person prefers to communicate.
“Each individual may find value from connecting in different ways, whether that’s attending a face-to-face group, connecting with a telephone support group or meeting someone through a peer connect program who you can touch base with via a phone call or email as often as you like,” she says. “It could even be as simple as joining a Facebook group of likeminded people.”