Grappling with disease is debilitating enough. Throw in the inability to attain a diagnosis for unexplained falls, muscle weakness and extreme fatigue is even more terrifying. However, sadly a reality for those suffering with myositis.
On average it takes a person living with myositis five doctor visits and three-and-a-half years to become diagnosed.
Creswick man Ken Koenig, 68, suffers from a form of myositis called Inclusion Body Myositis (IBM) and considers himself one of the lucky ones, having been able to receive a diagnosis in less than a year.
"I was diagnosed at the end of 2018 after I came back from an overseas trip and had some issues with climbing up and down and walking," Mr Koenig said.
"I ended up seeing my local specialist who spent an hour with me and pretty much said what I had on my first appointment."
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However, for Myositis Association of Australia president Christine Lowe, who also battles with the debilitating disease, she was not as fortunate.
"It took me six years of saying to doctors something is not right with my legs," Ms Lowe said.
Ms Lowe, who said she used to be quite an active person dabbling in many sports, said it was one day after cricket that she realised something definitely was not right.
"I was quite a sporty person; I played cricket and I just remember being on my haunches standing up throwing the ball and I couldn't even get down and if I got down it was like a serious effort to get up again," she said.
Ms Lowe and Mr Koenig said myositis often went under-detected due to many health professions attributing symptoms to old age and in some instances 'gaslighting' patients.
"Most GPs don't know much about myositis so it's not in their head to think of when someone might present with mobility issues because they'll look at them and say, 'well you are over 50, perhaps you're a bit deconditioned'," Ms Lowe said.
"It's a very typical, dismissive sort of approach.
"The first GP that I went to was very skeptical when I told him of my diagnosis and responded in a way as if to say that it was rubbish and not a real thing."
While there is presently no cure for the degenerative disease, Ms Lowe said awareness was the first step in bridging the divide between health specialists and myositis sufferers.
"Myositis is another one of those neuromuscular conditions like motor neuron disease, Parkinson's disease, muscular dystrophy, and multiple sclerosis that GPs need to put on their list and think, maybe this person has got myositis, so I need to refer them to a specialist quickly," she said.
"They need to ensure people presenting with these symptoms are not brushed off and are able to get the required tests including blood tests, MRIs and biopsies."
On Thursday, myositis sufferers from across Ballarat and western Victoria convened at Wendouree's Wildseed Cafe for the second time.
Organised by the Myositis Association of Australia, Mr Koenig who attended for the first time, said meeting others living with the diseases made him more appreciative of his life.
"I'm very lucky because my myositis isn't deteriorating very rapidly at the moment," he said.
"Mine's sort of plateaued a bit and I'm very thankful for that."
Ms Lowe said meetings were important in letting other myositis sufferers know they were not alone.
"It is such a rare condition and it's very isolating and people don't get to meet others with the disease and they have so many questions constantly about why this is happening to them and is this happening to anyone else?" she said.
"So it's quite reassuring for people to meet others who are experiencing the same thing and share experiences."
Approximately one in 10,000 people are impacted by myositis.
Symptoms often include difficulty swallowing, walking and overall loss in bodily strength.
While Mr Koenig finds it daunting to think about his health in the future, he is committed to living a vibrant life.
"I will continue to do what I enjoy and ensure I stay active as much as I can," he said.
"There's no point in sitting down in a chair and watching TV all day, because it's just gonna make it worse.
"I want to keep moving and I will try and live my life in a way that is meaningful."
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