On 12 October, the world will come together for World Arthritis Day (WAD) – a day dedicated to raising awareness about rheumatic and musculoskeletal diseases (RMDs). More than 7 million Australians live with arthritis or a musculoskeletal condition such as osteoarthritis, inflammatory arthritis, gout, back pain, Sjogren’s Disease and many others.
This year, the theme is all about dreams – the personal goals, hopes and visions that keep us moving forward. Dreams may be big or small, deeply personal or widely shared. For people living with RMDs, they represent strength, resilience and determination in the face of daily challenges.
The goal behind this theme is to amplify the voices of people living with RMDs and work with healthcare professionals, researchers and advocates to help turn dreams into reality.
For this article, we reached out to our community and asked them to share their dreams. Here’s what they told us.
A pain-free future
Pain can come and go and vary in severity, but the reality is that RMDs and pain go hand in hand. While pain is a universal experience, many people only deal with it for short periods of perhaps a few days or weeks. However, when it persists for more extended periods or rises in bursts of intensity in an unpredictable cycle, it can impact mobility, sleep patterns, mental health, relationships, employment and much more. As Annette B said, “Pain has such a debilitating impact on your life”.
Shirani W expanded her answer, “My dreams are to be pain-free and not have arthritis. Also, though, I wonder if having arthritis has made me understand people better and be more caring.”
The dream of being pain-free is now more achievable than ever. With research giving us new insights into how pain works and manifests in various conditions, we have a better understanding of how to manage it holistically.
Treatments are also becoming more refined. For example, new therapies for inflammatory conditions can now pinpoint the parts of the immune system responsible for specific forms of inflammation and target those, with minimal disruption to the rest of the body. Researchers are also developing ways to customise these therapies for individuals.
With many of these advanced treatments now in use, it is increasingly possible for people with RMDs to achieve remission for many years. Susan H told us, “My dream is to return to remission from my rheumatoid arthritis (RA) … I know it is possible as I’ve been there before”.
Andrea M took this aim further and said, “I dream of a cure for RA”. While there are some excellent ways to manage RA symptoms, there is no permanent cure yet. The good news is the scientific community is constantly making discoveries to ensure a cure for RA and other RMDs won’t be a fantasy forever.
A better understanding of chronic pain
One of the many challenges for people with RMDs is that others don’t always understand or believe them when they talk about their experiences of chronic pain. Part of the reason for this is that, in our society, people were once expected to put up with pain and not talk about it.
Thankfully, those attitudes are changing, but it is a slow process, and there is still a lot of stigma associated with pain, especially when the people with pain “don’t look sick”. For example, people with RMDs are sometimes told they are lazy or are treated like hypochondriacs because their pain is ongoing or they are just too drained to perform basic daily tasks.
Pain can also present in numerous ways and vary in intensity and duration, so there is no “one size fits all”. Pain charts can often be meaningless for people with more than one source of pain. For example, they could have acute pain from an injury, achy pain from a sore back and severe chronic pain in an arthritic joint. If they get asked to rate their current pain on a scale of one to 10, where would they start? Which source of pain?
Some people are even treated like drug addicts because they rely on pain medication to function effectively. However, the majority of people who use medicines for chronic pain do so responsibly and under the supervision of their treating doctor.
Philomenia K’s comments reflected this theme. “I dream of a better understanding of chronic pain and how it affects all people who have it differently”, she shared. “The hospital system is better than it was, but, in my view, it still has a long way to go when looking after people with a chronic illness”, she added.
A brighter future
Just as valid as dreams for an end to pain and suffering were the dreams our community shared for a brighter future. Lyn W summed this up nicely. “I’d like to wake up one morning and WANT to get out of bed”.
Naomi C shared how she has turned her life around by following her dream. “Realising dreams when you are living with a lifelong autoimmune condition can seem impossible, but they don’t always have to be. We all need to dream, and they can come true if you work at them, little by little and keep believing you can do it. Dreams keep me going, and it’s the reason I get up every morning.”
“I never wanted to let my rheumatoid arthritis intrude on what my heart yearns for. Seven years ago, I made a bold decision to move to a remote island in Tasmania. It was what I needed to do for me. In my mind, you only get one life, and I don’t want to die with regrets. Despite my healthcare team trying to dissuade me, I weighed up the risks and decided I could overcome them, and it would make me stronger. And it has! I can still get the medical support I need; it’s just not on my doorstep. It’s a beautiful and challenging life here, and that’s a good balance for me. So, if you feel there is something in life that will make you happy and that thought keeps nagging you, but you push it away because you feel you can’t do it, don’t. You are not your condition, and you are stronger than you think.”
Katie W is also seeing her dreams fulfilled. “After growing and breastfeeding three kids, plus having chronic medical conditions, I never thought I’d go back to full-time work. Caring for kids and doing part-time work was hard enough. I felt I never had any energy until I changed rheumatologists and got onto different meds.”
“Now, not only am I working full time, but I started playing football, and I can still enjoy time with my kids instead of feeling constant guilt about needing rest and telling them I can’t do things. New treatments, advances in the way doctors and workplaces treat people with hidden disability give me hope for more of these good days and flexibility to cope with the bad”.
More opportunities to make a difference
Margo L told us, “I’d love to somehow contribute to research on arthritis as an academic (linguist) with lived experience of the condition”.
As for this author, I’ve been empowered by many people like me with chronic conditions and disabilities who share their stories and make a difference. My dream is to empower others to share their stories, helping to shape our health systems and society’s attitudes.
At CreakyJoints Australia and GHLF Australia, our dream is to make it easier for people to access the health services, information and treatments they need when they need them, in affordable and accessible ways.
How You Can Help Us All Achieve Our Dreams
Did you know that each of you can help researchers develop new treatments that match your needs, help policy makers provide better access to them, help your healthcare professionals provide better services and help others better understand what life is like in your shoes?
You might think you don’t have the experience, knowledge or skills to make a difference, but you do. It’s called lived experience, and it is something that many researchers, health decision-makers, and even your own doctors may not have. Here are some of the ways you can share your voice.
- Ask your healthcare professionals if there are new treatment options that may improve your quality of life. You can also ask for advice on other ways to help yourself, such as seeking community or government support, joining an exercise or wellness program or joining a support group.
- Share your experiences of RMDs with the people around you who are happy to listen. You might be surprised how open and accepting they can be. It is okay to ask for help.
- Share your experiences of RMDs further afield, such as on social media or in surveys, awareness campaigns or focus groups run by patient organisations.
- Join a hospital committee, speak with your local member of parliament, or write a letter to your council providing constructive feedback on their health services.
- Find out how you can participate in or co-design health research projects, advocate to get new treatments added to the Pharmaceutical Benefits Scheme or have your say about changes to Medicare services. Many health peak bodies and patient organisations can help you find effective ways to advocate that suit you.
Together, let’s amplify the voices of people living with RMDs — because when we share our dreams, we inspire action, hope and change.
If you want to learn more about how you can become a patient advocate, you can email us at info@ghlf.org.au
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