OH! Magazine - Australian Version October 2018 - Page 9

THE TRUTH ABOUT ARTHRITIS CreakyJoints Australia reveals what arthritis looks like. hile most Australians might know a relative, friend or acquaintance living with arthritis, few are completely aware of the sometimes debilitating and isolating consequences that come from living with the disease. That’s why, this spring, CreakyJoints Australia , the go-to source for Australian arthritis patients and their families, is raising awareness around the stark reality of living with arthritis. W Canberra resident, Janine Monty, was an active and ambitious 36-year-old when she was first diagnosed with various forms of inflammatory arthritis, including mixed connective tissue disease, rheumatoid arthritis and undifferentiated spondylitis. It was a development that would eventually ‘dismantle’ her life. ‘I used to be really fit and active – I used to run 5km a day just for fun. I was a web- developer and had great contracts. Life was going really well’, Monty explains. ‘Once the arthritis took over, I couldn’t do what I used to, and I wasn’t so much fun anymore. Eventually, my marriage ended and I lost my job. Arthritis dismantled my life completely’, she explains. Despite crippling pain and other medical complications, Monty remains determined to be an active and enthusiastic contributor to society. ‘On my “good days” I do as much exercise as I can; I go to the gym and visit my physical therapist.’ The trouble, she says, it that most Australians have no concept of what’s hidden under the surface of her positive attitude, or what it’s like for her on ‘bad days’ when her condition renders her entirely crippled and exhausted. ‘People don’t understand how debilitating arthritis is. They think it’s just sore joints, but there are days when I am in complete agony and feeling horrible. That’s why I may have to turn down a social event at the last minute. That’s why you won’t see me at the gym. That’s why I am unable to reply to your email or text message.’ By speaking up about her condition, Monty hopes to shed light on the invisible struggle going on inside the homes of arthritis sufferers, every day. The main points she would like all Australians to know are: Appearances are deceiving: ‘I may look 100 per cent well; I can be going to the gym and exercising, or out for coffee, smiling and chatting. But don’t be fooled. You don’t see what went on behind the scenes: the medication I have to take; the pain I’m smiling through; the recuperation I’ll have to do afterwards.’ They aren’t lazy or ‘slack’: ‘When you’re on a disability pension people can assume you’re lazy, and when you’re on opioid medication, there’s a stigma that you’re a drug-addict. But none of this is true.’ They are able to contribute: ‘I can’t hold down a full-time job because I never know when I am going to be up or down, but I am able to use my skills as a freelance copywriter and designer. All that’s required is for employers to be flexible and understand that there are days I simply can’t work.’ Every day is different: ‘If I wake up to a “bad day” I will have to cancel appointments and miss deadlines. You may have seen me at the gym yesterday – I may have been okay then – but today is a totally different story. If I say I’m in a lot of pain, please, listen. Believe me. I know my limitations and I know, more than anyone, what I’m missing out on if I don’t show up to something.’ Isolation is not voluntary: ‘If you know someone in your life with arthritis – a friend, family member, neighbour – and they haven’t been out of the house, that’s the time they may need you most. Knock on the door. Check on them and offer your support or a cooked meal. If you know someone living with arthritis, keep reaching out to them. It’s important to keep inviting them to social gatherings even if they have had to cancel ones in the past. Don’t give up on them – just try and act with compassion and appreciate that every day can be different for those living with arthritis. CreakyJoints Australia Founded in 2015, CreakyJoints Australia is the go-to source for Australian arthritis patients and their families who are seeking education, support, advocacy and patient-centred research. For more information visit www.CreakyJoints.org.au OH! MAGAZINE ( OCTOBER 2018 ) 9