More than a decade ago, Stan Walter began feeling the muscles in his legs were weak.

"What I noticed, when I was climbing up stairs or a ladder, I was doing it with my arms, that was the first sign, my arms would pull me up," he said this week.

His wife Trish also saw some differences.

"We had a split-level house in Baranduda and he had trouble coming up and down the steps," she recalled. "That was the start of it, I think, he couldn't handle the steps."

In a similar way, Marg Doherty struggled to get up from a chair while Maralyn Allitt also found she couldn't climb stairs without pulling herself up.

All three have since been diagnosed with myositis, a collective term for rare autoimmune conditions caused by the body's immune system turning against itself and destroying healthy muscle tissue instead of building new muscle tissue.

There are five primary adult myositis diseases and also forms that affect children. The occurrence rate is about 10 in 100,000 people with currently no cure and limited treatments.

But such basic information was not immediately available to the three Border patients, with numerous tests, investigations and eliminations needed before they received any answers.

And even then, the health professionals around them often had no experience, or even knowledge, of myositis.

Mrs Doherty remembers her feelings when one doctor finally undertook to "get to the bottom of this".

"I just was crying with relief because I thought 'someone's believing me'," she said.

"People make assumptions ... it's partly invisible; it's lack of understanding, I think, because we can look quite well."

This widespread ignorance motivates Mr and Mrs Walter, Mrs Allitt and Mrs Doherty to speak publicly during Myositis Awareness Month throughout May.

Their Border support group, Keeping in Touch, will meet for lunch on Wednesday at Commercial Club Albury.

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Up to 24 people attend the group's quarterly gatherings, with members travelling from Barooga, Benalla, King Valley and Wagga as well as Albury-Wodonga.

These events allow those with myositis to share their experiences and information with people who understand even better than family.

Myositis Association Australia secretary Anita Chalmers said getting the word out that support was available was a key factor of Myositis Awareness Month.

"You're not alone, that's the crux of it," she said.

"People who are diagnosed, especially in country areas, they think, 'What do I do now?

"'I've been told I've got this dreadful condition, I don't know anything about it, what do I do and who do I turn to for help?' We've got 373 members at the moment, and in the last two months we had 28 people join us."

Aligned with that is helping GPs and allied health workers like physiotherapists, occupational therapists and exercise physiologists learn more about the misunderstood condition.

"We're also targeting social workers because they're the ones that if you had a fall and you're in hospital, they're the ones that need to know that there is an association that can help," she said.

Mrs Chalmers recalled telling her doctor, after a couple of falls, there was something wrong with her legs.

"She just said 'Buy a walking stick', and it took two years to get a diagnosis," the secretary said.

"We need to speed the process up to get a diagnosis more quickly."

Mrs Allitt and Mrs Doherty, both aged in their late 60s, can certainly relate to diagnosis delays.

Each retired early from careers they valued, as a small-business owner and pharmacist respectively, because of myositis.

Mrs Allitt had been planning a trip to Italy about 2016 when she started struggling on stairs and originally thought maybe a pinched nerve or arthritis could be the cause.

But her muscle strength didn't improve after two hip replacements, further investigation revealed the truth - and the doctor outlined a potential future of not being able to walk or even swallow.

"When I was diagnosed, I didn't ask any questions because it shocked me," she said.

These days Mrs Allitt is still able to drive, tries to do 10,000 steps each day and lives with husband Kevin in a purpose-built Thurgoona home that has "not one step in the place".

"I did go to Italy and I did manage with a stick climbing steps, because there's lots of steps in Italy," she smiled.

The Walters moved from Baranduda to a more suitable central Albury home in 2012, but Mr Walter, now 81, no longer drives and uses a motorised scooter.

"I'm having trouble getting out of cars now, I can get out of a high car but there's no strength in my quads," he said.

An active sportsman for many years, Mr Walter marks having to give up bowls in 2010 as the main starting point of his condition. He can't hold a pen any more but taught himself to use a computer.

Falls are a real risk and common fear of people with myositis yet it's also important to keep moving.

More research is needed to determine the causes of myositis, but stress and genetics could play some part.

Jindera's Mrs Doherty, who convenes Keeping in Touch, focuses on what people can do, rather than what is now not possible.

"I think it's a grieving process, like many things with chronic diseases," she said.

"Some people don't get out of the denial phase, you know, the anger, anxiety, depression and so on but it's good to get to the acceptance stage and I can say I've done that after so many years.

"We have to live our life to the best of our ability."

For more information, go to myositis.org.au/.

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