I don’t care what you love. I just care that you love it. I spent…
For Janine Monty, a typical week used to involve work, exercise, socialising.
Now, walking around the lake is enough to leave her in overwhelming pain.
“I had a great life, it was good,” she says. “Where life was pretty simple, free, average and normal, now it’s very impaired and takes a lot of planning”.
When she was just 36-years-old Janine was diagnosed with inflammatory arthritis, a disease she knew nothing about. This World Arthritis Awareness Day, she’s sharing her story in the hopes others with similar symptoms go to the doctor, get a diagnosis and get the best chance of remission.
An avid runner and self-professed gym junkie, Janine was young, fit and healthy when her hands first started to feel sore and swollen.
“They were sore, I was clumsy and it hurt it hurt to grip things and then I felt really weak,” she describes. “Then my feet started hurting as well, it was hard to walk, and then my knees”.
Eventually Janine would wake up one day unable to get out of bed. “It was agony, I was so stiff and it hurt to bend,” she recalls. “That was the point when I really realised I’d have to see a doctor”.
Due to a lack of awareness even within the medical realm at the time, Janine was misdiagnosed several times before eventually, one year later, finally landing in a rheumatologist’s office.
From there she would be diagnosed with several forms of inflammatory arthritis, including mixed connective tissue disease, rheumatoid arthritis and undifferentiated spondylitis. At first, she fell into the all too common trap of underestimating her condition.
“When I was told I had arthritis I wasn’t worried at all, I had no idea what I was dealing with,” she says. “I thought it didn’t sound that bad”.
“I found out pretty quickly because it progressed pretty quickly,” she continues. “It just exploded everywhere and it was the most painful thing ever”.
Comparable to an all-over migraine, these “full body mega-flares” see almost all of her joints swollen, inflamed and extraordinarily painful. These flare ups are part of the reason she says, “it’s so important to get early diagnosis and get on evidence-based treatment as soon as possible, that’s your best chance of getting the disease under control and into remission”.
Effective diagnosis is just one of the issues pertaining to a lack of understanding of arthritis’ many forms. Misinformation surrounding arthritis, particularly inflammatory arthritis such as Janine’s, contributes to the stigma and struggle going on inside the homes of those living with arthritis every day.
“I think people don’t understand that arthritis can be that bad for starters but somehow arthritis has [also] become the slang for every ache and pain,” says Janine. “I have people tell me to my face that arthritis is not a big deal”.
As is the nature of the invisible disease, living with arthritis is too often an isolating experience.
“I think that also makes people not realise how serious it is,” says Janine. “I could be standing there in the gym and doing a yoga class or something but I’d be in tears in the car because it was hurting so much”.
“You can’t see anything with arthritis, the pain is totally invisible,” she continues. “You look totally normal and that’s hard for people to understand”.
“Sometimes it feels like no one will listen, like you’re being dismissed, everyone needs a shoulder to lean on”.
This is where CreakyJoints Australia steps in, a nationwide source for Australian arthritis patients and their families who are seeking education, support, advocacy and patient-centred research. On a mission to empower those living with arthritis, the organisation connects patients across the country.
“I think online is a really important support system for a lot of people,” says Janine. “Having those support circles makes a huge difference”.
This year’s World Arthritis Day is centred around early diagnosis, with the slogan ‘Don’t Delay, Connect Today’.
“Just one thing to take away from [my story] is that if you have joint pain, swelling, fatigue, really terrible symptoms, then see a doctor and push for a referral to a rheumatologist,” says Janine. “Because, early treatment increases your chances of being in remission, doing well and living a normal life”.
World Arthritis Day is this Friday 12 October. Find out more about CreakyJoints Australia here.