Updated
For five years, Caitlin Martin struggled to work out what was wrong with her.
Crippling headaches that stayed with her for weeks at a time; fatigue so bad she struggled to get out of bed. Then there was the pain of being dismissed by a succession of doctors who were baffled at best, and dismissive at worst.
"It made you feel so helpless and hopeless," Caitlin, 19, told Lateline.
"You just need someone to help you and there is no-one."
She was repeatedly told her symptoms were the result of being a teenager going through puberty. That changed the day she was finally diagnosed with multiple sclerosis.
"We went out to dinner afterwards and sort of celebrated, because once you know what something is, you can treat it and move on," she said.
"It is just the not knowing that is the hardest part."
Multiple sclerosis attacks the central nervous system and can impact on the brain, spinal cord and optic nerves. It is the most common neurological disease among young adults.
The average age of diagnosis is 30; 75 per cent of those diagnosed with MS are women.
In the Hunter region, where Caitlin is now being treated, there has been a sharp increase in the number of people diagnosed with the disease.
"In the last 15 years the prevalence and the incidence in this area has doubled," Associate Professor Jeannette Lechner-Scott, the senior staff specialist in neurology at the John Hunter Hospital in Newcastle, said.
"And it is more female and young female patients that are diagnosed with this disease."
No-one is absolutely sure why that is.
"Potentially the environment, with lack of sunlight exposure, diet, [and] increasing obesity might be factors that play a role," Dr Lechner-Scott said.
Caitlin was diagnosed as she was about to begin her HSC. Her final years of school were tough.
"I think high school is a super tough time for anyone, the HSC especially," she said.
"But for me personally I didn't think I was actually going to graduate. But I did — and that makes me emotional because I am proud of myself."
MS for Caitlin meant enduring fatigue, poor word recall, cognitive fog and weakness on her left side. At one point, the bottom half of her face went numb. Another time, she lost feeling in a foot.
She had long harboured a desire to become a biomedical scientist. The diagnosis changed that. Art, which started out as therapy, is now firmly the focus of her career. She is studying to become a teacher in creative industries.
"I decided that I really wanted to pursue art and make my life fun — have a good quality of life and just create and be happy," she said.
Caitlin sees herself fortunate to be diagnosed so young.
"There are different types of multiple sclerosis. I have relapsing remitting, which is the good type to have because that means there are lots of different treatment options around for me," she said.
"Being treated so young, my disease progression has been significantly slowed down."
Her art now acts as a kind of therapy.
"When you have an illness I think that you need a creative outlet — you need something to channel your energies and emotion into."
Watch Caitlin's story on Lateline tonight at 9:30pm on the ABC News channel and 10:30pm on ABC TV.
Topics: arts-and-entertainment, painting, visual-art, health, womens-health, multiple-sclerosis, newcastle-2300
First posted