More than 350 million people around the world are living with arthritis and although most people know a friend, family member or loved one who is suffering from the condition, many are unaware that the health problem goes beyond a few aches and pains.
One person who knows the realities of living with arthritis all too well is Canberra resident Janine Monty, who spoke to Starts at 60 about what it is really like living with arthritis.
While she had been noticing pain in her hands, fingers and wrists for some time, doctors initially told Janine they couldn’t find anything wrong with her. The pain would come and go but one day, after also noticing pain in her feet, hips, knees and hands, she knew something was wrong.
“Prior to that, I had been fit and healthy,” she explained. “I was a jogger, I would run 5km for fun and I was a gym junkie and a fitness nut.”
Doctors again were confused and after being sent for numerous tests and meeting with all kinds of specialists, it was a rheumatologist who eventually diagnosed her with inflammatory arthritis. Janine was diagnosed 13 years ago and although she was able to start treatment, her delayed diagnosis cost her dearly.
“Back then, a lot of doctors didn’t realise you could have perfectly normal blood work and still have arthritis,” she said. “They kind of ruled it out on the basis that my blood work was fine. That’s just not the case.”
Arthritis had a huge impact on Janine’s life and within two years, she’d lost her career, her marriage had broken down and she lost friends. It’s also dramatically changed what she can do each day.
“I can just do a whole lot less. Some days I go to the gym, some days I use a wheelchair,” she said. “It’s that kind of thing. It can vary that much.”
On a good day, Janine explained that the pain is less severe and she has more energy. Without fatigue or feeling sick, exhausted, nauseous and dizzy, she can go about her life and do things. In contrast, bad days leave her bedridden and unable to do anything. Cooking a meal on those days is considered a major achievement.
While it’s hard on her, Janine said arthritis can also have a huge impact on carers. She said although she didn’t mean to, arthritis turned her into a different person and she needed help with the most simple of tasks. She was unable to take her kids to school, clean the house, and her work life was severely impacted.
“I never knew when I was going to be really sick or when I was going to be manageable,” she recalled. “It’s hard to plan and nothing is spontaneous anymore.”
Bad days are particularly tough especially because Janine wants nothing more than to get up and keep living her life. Unfortunately, the pain gets so bad that she can’t. With her hand function getting worse, Janine was forced to end her career as a web developer. Finding a new job is also hard because she has to disclose that she has rheumatoid arthritis.
A big part of managing her arthritis is exercise and physiotherapy, although Janine said getting on the right medication is vital.
“It’s so important to get on evidence-based treatments and disease-modifying medications that slow down the progression of the disease,” she said. “It can take a lot of time to find one that works for you. It’s an ongoing process.”
Similarly, finding the right support and help is also important for managing and living with arthritis. Janine is a member of CreakyJoints, an organisation that provides education, resources, information and support for those living with Arthritis. For this year’s World Arthritis Day on October 12, CreakyJoints wants to hear from people living with arthritis and for them to tell the world what they want others to know about the condition.
“A lot of people don’t understand how serious it is as a disease and how it can be a total body experience and it can be very painful,” Janine said. “It can affect your joints and can affect your heart, your lungs, your kidneys, the eyes. I’ve lost vision, I’ve lost my hearing. It takes a lot to manage it and people can get very sick by it.”
For more information visit creakyjoints.org.au