If anyone knows how to deal with chronic pain, it’s Melinda Bowd.
According to the Australian Institute of Health and Welfare, about 50 per cent of Australians are living with a chronic disease and about 20 per cent have at least two.
About 20 years ago, Melinda was diagnosed with psoriatic arthritis – an inflammatory arthritis that destroys joints and causes inflammation in the surrounding connective tissues, muscles and tendons.
She went from being a well and very active mother of three and full-time nurse to dealing with extreme pain on a daily basis – and eventually had to leave her job.
But Melinda’s skills and mental strength combined, and she has become an advocate for her own health – and for others living with chronic disease.
Initially, she said she found herself not only struggling with the constant pain, but also with the resultant mental toll.
“With the pain comes depression, and when I was depressed, I noticed every little pain,” she said. “I was too tired and in too much pain to continue working as a nurse.
“You can manage your pain, but you also need to manage your mental health. Otherwise, one crushes the other.”
Melinda believes that advocating for your own health is important, but stresses that this doesn’t mean doing it alone. 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.
Two decades on, and after five knee arthroscopies and thyroid cancer, she exudes positivity and resilience. And she is using her experience to help others living with arthritis through CreakyJoints Australia, an organisation that provides support, education, research and advocacy to patients and families.
“I’m more passionate than ever about advocating for and helping others living with my condition”, she says.
“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 1000-plus member Facebook support group, the Australian Psoriatic Arthritis Warriors.
“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 says Australians should be their own health advocates. She shares six tips to get started:
1. 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.
2. 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.
3. Research, to an extent.
Rather than looking to Google for answers and worse case scenarios, talk to other people living with arthritis. Ultimately, looking up your blood and test results won’t reflect on 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.
4. 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.
5. 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; others are wheelchair bound.
Your progress shouldn’t be 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.
6. 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 focus 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.
CreakyJoints Australia is a non-profit organisation founded in 2015 to assist arthritis patients and their families seeking education, support, advocacy and patient-centred research.
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