According to the Australian Institute of Health and Welfare, about half of all Australians are living with a chronic disease[1]. 

For Melinda Bowd, the diagnosis was psoriatic arthritis, a form of inflammatory arthritis that destroys joints and causes inflammation in the surrounding connective tissues, muscles and tendons . While there is no cure, Melinda believes that becoming an advocate for her own health has been key to living effectively with a chronic disease.

After her diagnosis of psoriatic arthritis, nearly two decades ago, Melinda went from being an extremely active mother of three and a full time nurse, to experiencing unbearable pain on a daily basis – eventually having to leave her job.

Initially, she found herself not only struggling with the constant pain, but the mental toll as well.

“With the pain comes depression, and when I was depressed, I noticed every little pain. I was too tired and in too much pain to continue working as a nurse,” she explains. “You can manage your pain, but you also need to manage your mental health. Otherwise one crushes the other.”

Almost 20 years on, and after five knee arthroscopies and overcoming thyroid cancer, Melinda still exudes positivity and resilience.

“I’m more passionate than ever about advocating for and helping others living with my condition”, she says.

Melinda believes that advocating for your health is important, but she also stresses that this doesn’t mean doing it alone. In her case, she visits her GP and rheumatologist regularly to help her manage her pain, and her qualifications as a nurse and a background in psychology allow her to nurture her mental health.

In her pursuit to help others living with arthritis, Melinda is a patient council member representing Victoria for CreakyJoints Australia, an organisation which provides support, education, research and advocacy to Australian patients and families affected by arthritis.

“It’s nice to be part of an organisation that’s almost a support group within itself, as well as providing advice, education and research. I’ll often talk about CreakyJoints with my 1,000+ member Facebook support group, the Australian Psoriatic Arthritis Warriors,” Melinda continues. “I’m passionate about spreading the word and trying to help other people and CreakyJoints has built me up and given me the confidence to do this.”

Melinda encourages other Australians to be their own health advocate today and shares six important tips to get started. There is more than one option.

“I’ve found a lot of people will take their doctor’s word for it and won’t seek other options. Remember your doctor is actually your employee – you’re paying them to provide a service. So, if you’re not happy, ask for a referral and get a second opinion.”

Ask questions.

“Make a list of questions before you see your doctor or rheumatologist and list the symptoms you’re noticing. Everything creates a picture of the disease and will help both you and your medical team determine the best way forward for you.”

Research, to an extent.

“Rather than looking to Google for answers and worse case scenarios, talk to other people living with arthritis instead. Ultimately, looking up your blood and test results won’t reflect how you’re feeling. Talking to people about their symptoms and how they’re managing them can be more meaningful; allowing you to discover tools to manage your own disease and find a routine that works for you.”

Seek support.

“ It’s important to have a team backing you, whether it’s your rheumatologist, a Facebook support group, CreakyJoints, or your friends and family. Find a support system that works for you and will help you keep both your physical and mental health in check.”

It’s different for everyone.

“Striving to meet certain expectations and comparing yourself to others suffering from the same condition, will set you up for failure. Some people can still go to the gym, while others are wheelchair bound. Your progress isn’t determined by someone else’s, it’s about finding a routine that works for you. For me, I decide what I’m going to wear every day with the shoes I need to wear, because of my pain, and I work my way up from there. You will work out little tools like this along the way to make your day better.”

You are not a slave to the disease.

“I always tell myself that I’m Melinda and I just happen to have psoriatic arthritis, not the other way round. When you start to think and talk about arthritis as though it controls your life, it will. Adapt your life to it, rather than focusing on the disease itself and the damage it’s doing. If that means using a wheelie walker, sleeping more, or changing your career, then do what you’ve got to do, for you.”

About 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. Our mission is to empower Australians living with arthritis to put themselves at the centre of their own care by vocalising their treatment preferences and working in partnership with their healthcare providers. Via our social media channels CreakyJoints Australia connects arthritis patients throughout the country. The organisation also provides opportunities for members to proactively advocate on behalf of the arthritis community and participate in research that will broaden the global understanding of arthritis management. For more information about joining (for free) visit www.CreakyJoints.org.au

CreakyJoints Australia is an Australian non-profit that is part of the U.S-based Global Healthy Living Foundation, a non-profit organisation whose mission is to improve the quality of life for people with chronic illness. It is modelled after the US, patient-led organisation, CreakyJoints®, founded in 1999 by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp.

Reference

[1] Australian Institute of Health and Welfare. Last accessed 21-11-18 at www.aihw.gov.au