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What it’s really like to live with rheumatoid arthritis

What it’s really like to live with rheumatoid arthritis

What it’s really like to live with rheumatoid arthritis

Rheumatoid arthritis survivor Shannyn Meloncelli, shares the realities of life with a chronic illness and how Australians can help support their loved ones.

Over 400,000 Australians have rheumatoid arthritis (RA), according to the Australian Institute of Health and Welfare. Among them is 41 year old Queensland based mother of two, Shannyn Meloncelli, who was diagnosed with rheumatoid arthritis almost a decade ago, at 36 weeks pregnant with her first child.

“My life has completely changed since then. My children’s father left and I was left chronically unwell and a single mother to two babies under 18 months old,” Meloncelli explains. “Before, I was very independent and financially secure but now, with a systemic autoimmune condition that affects everything from organs to connective tissue, I’m challenged everyday; physically, mentally and financially.”

Meloncelli mentions that across the board, people can have extensive health issues that exist alongside their arthritis. For Meloncelli, she also has thyroid condition Hashimoto’s and, in the last five years, was diagnosed with meningioma brain tumours. With no known cause for her tumours, which thankfully are benign, Meloncelli has already endured one grueling surgery and undergone further testing and treatment for her remaining tumours.

“Now I take things one day at a time. My brain tumours have exacerbated my RA symptoms and I can have flare-ups that last weeks to up to a year – it can all be a real juggle,” she explains. “Having fantastic friends, a supportive family and a loving partner has certainly helped me.”

Meloncelli believes that many people can be left in isolation after an arthritis diagnosis. “A lot of people don’t understand RA and see arthritis in terms of osteoarthritis, which is a different form of arthritis with different symptoms. This can be a huge blow for the newly diagnosed, especially younger people,” she says. “You can lose a lot of friends when you become chronically unwell. But there’s a lot of things you just can’t do by yourself anymore and it’s important to find people that will support you, and divorce yourself from those that are unhelpful and not understanding.”

Shannyn is also a patient advocate for CreakyJoints Australia, representing Queensland. “Organisations like CreakyJoints are important because they are proactive and advocate for healthier habits for those living with arthritis,” she explains.

She shares her tips to being more supportive of a loved one with arthritis.

Be understanding and non-judgemental. Fatigue is probably one of the hardest things for me to deal with when it comes to arthritis (many times it’s even harder than managing the pain). With fatigue, no matter how much sleep someone gets, they can still wake up feeling like they’ve never slept at all. The resulting exhaustion means they’ll have to rest for a few hours or cancel plans at the last minute. It’s important to be understanding of your loved ones and what they’re going through and not be quick to jump to judgement when they need to back out of a special occasion, party or even a trip to the cinema.

Offer practical support. Tasks that seem simple to most people, like grocery shopping, cooking and cleaning, are a far bigger ordeal when living with a chronic illness. Practical assistance from family members and friends is something I’m always grateful for and can ultimately end up being the biggest help. Cooking a meal or minding their children for a few hours so they can rest, can be just as meaningful and important as the emotional support.

Don’t forget self care. Caring for someone with arthritis can be difficult and exhausting and it’s important to take care of yourself, rather than constantly focusing all your attention on helping that person. Self care will stop you from getting “supporter fatigue” and will allow you to remember your needs, so you can come back and be even more helpful to your loved one.

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One Comment on What it’s really like to live with rheumatoid arthritis

  • Linda
    February 6, 2019 11:40 pm

    Wholefood plant based diet can reverse this disease as well as many others, you also need to detox your liver, drink lemon juice first thing and follow up with celery juice, will help you heal. Borrow from the library a book by Anthony William, the medical medium or look him up on the internet.

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