ONE of the toughest things about having multiple sclerosis (MS) is that other people never fully understand the profound pain.
They can’t feel your dizziness or see your fatigue, says Lyn Petruccelli, who has lived with the disease for five years but looks and sounds like a healthy 53-year-old.
Now almost 2000 people with MS are using a free app to share images depicting their hidden symptoms, like brain fog, numbness and spasticity.
The idea is to help people understand how disabling MS is.
One of the people who learned the hard way is a man who berated Ms Petruccelli for parking in a disabled spot.
She took the time to explain, and he felt so bad that he apologised and helped her with her shopping bags.
At the heart of the picture project is an exhibition in Sydney inspired by nine people with MS who briefed photographers about their symptoms.
“The pictures show how we feel,” says Ms Petruccelli. “You can see it. I can explain it. It’s fantastic.”
The theme of Ms Petruccelli’s photograph is dizziness. It’s taken by her husband, Louis, a commercial photographer.
“I’m not in the photograph, but it’s my dizziness.
“I basically feel like I’m on a boat a lot of the time. But I’m OK once I get my sea legs.”
Each photograph in the exhibition has a different theme.
One inspired by a 12-year-old Darcy McCann is called Fatigue.
Another inspired by Paralympic gold medallist Carol Cooke is called Balance.
Ms Petruccelli’s daughter Laura came up with the idea and pulled it all together.
“The hardest thing about being related to someone with MS is a feeling of helplessness,” says the 23-year-old, who works at an advertising agency.
“This has been my contribution. Not just for my mum, but for the whole disease.”
The exhibition is timed to coincide with World MS Day on May 28 and supports the fundraising MS Walk and Fun Run on June 1.
There is a lot of misunderstanding about MS, says neurologist Dr John Parratt of Sydney’s Royal North Shore Hospital.
The majority of symptoms are not obvious to others for at least the first 10 years.
“But people suffer all manner of pain and profound fatigue that they have to endure every day.
“Some feel slow and lethargic and are unable to get rid of a foggy feeling in the head.”
*The free SeeingMS Exhibition runs from May 28 to June 6 at SunStudios, 42 Maddox Street, Alexandria NSW. The digital pictures are on www.seeingms.com