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12/Dec/2023

This blog was written by Sass, a member of our Teen Talk group.

So. You want to know what life might look like at Uni with a musculoskeletal condition / arthritis? Well, as an individual whose bones/joints/various other systems dislike her, and who has completed her first year of uni, allow me to provide an insight into my experience in the hope it can help you too.

Right. Starting off strong with disability services. You should absolutely get in touch with any disability services on campus ASAP. Do. Not. Wait. They can help you navigate your Uni experience as a person with a chronic condition. I waited too long, and was ✨stressing✨ when in reality I could have fixed that by being on top of getting my accommodations earlier.

Ok, you’ve got your accommodations. What can you expect now?

For me, my hypermobility makes fine motor skills inconveniently painful, and so in line with this (and the general nature of Uni assignments often being digital) I was able to access my exams and tasks on a purely digital basis unless absolutely necessary. When I couldn’t use tech, I was provided with a student peer who scribed for me, and they were all the most lovely people. I also got extra time, which I rarely used if at all, but it’s good to have that up your sleeve regardless if you might need it.

Uni is also a very social time, and let’s be honest, socialising can be a little draining sometimes (where my introverts at?). The most important thing to remember here is that you should surround yourself with friends who are able to understand that you may require more rest or downtime, and/or that you may need activities to be modified for your enjoyment. Please, please, please, promise me you won’t burn yourself out by not speaking up about your needs. You deserve to be respected in all situations.

Managing the stress of exam season? Been there, and I’ll unfortunately continue to do that for the next two years! How I manage involves reading before bed to ensure I get good sleep, going on gentle walks, basically trying to reduce stress. I drink a lot of tea as well, and have the occasional hot choccie (gotta treat yourself, right?) and this helps me to relax. Also, I’ve been trying to stop myself from comparing my results to others. You are in a race ONLY WITH YOURSELF. Your only opponent is your personal best.

Ok, in summary:

respecting your needs + having reliable friends + not comparing yourself to others + getting accommodations ASAP = good year.

Now, in the words of Ignatius Loyola, go forth and set the world on fire. 🙂

 

If you’d like to write a blog to share with our community, please contact us

Contact our free national Help Line

If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, or accessing services be sure to call our nurses. They’re available Monday to Thursday between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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12/Dec/2023

Our child has seen so many specialists and now they have been told to go to a kid’s physio. Are you thinking how will a physio help? Or how will this be any different to any other appointments we have? What do I tell my child they will be doing with them?

I am Nicole Pates, a Titled Paediatric Physiotherapist and director of Western Kids Health, a paediatric clinic in Perth Western Australia. I have been a Paediatric physio for over 13 years and these are the things I would like you to know about seeing a paediatric physio.

Children and teenagers, as we all know, are different from adults. Not just physically, but in all of their systems. Their brain is growing and their understanding of their body and how it works is constantly changing. Add into that school, friends and puberty and well, it can be a lot. Let alone managing chronic pain and fatigue on top of this. This is why it is important to work together with a physiotherapist who is experienced in working with kids and teens, who understands growth and development. You can search for a Titled or Specialist Paediatric Physiotherapist, who has undertaken extra study or experience in paediatrics, on the Australian Physio website https://choose.physio/find-a-physio

For families of children with persistent pain and / or fatigue, finding the right help can be tricky.  You can find a practitioner experienced in working in paediatric pain on the Australian Pain Society website  https://www.apsoc.org.au/Home/wcontent2/60

Once you have chosen a physiotherapist you will be *hopefully* be on your way to an appointment. You may be required to fill out some questionnaires or forms, prior to your initial appointment, depending on your reason for visiting the physiotherapist.

Typically, an initial appointment for children with chronic musculoskeletal / rheumatological conditions will be an hour or potentially more. For some families at Western Kids Health, we might sit down for 2 hours with not just physio but also OT and psychology. I encourage you to contact your chosen clinic to find out more about the first appointment. It is important to dress in clothes that are comfortable to move in and take a water bottle if needed.

Your physiotherapist may ask lots of questions in the first appointment. Not just about your child’s condition, symptoms, history, current team and limitations but also about their strengths, likes and future goals. Your physio will then watch how your child moves and plays, particularly the things they are having trouble with.

We love watching kids move and figuring out the different reasons as to why they might be having trouble or moving differently.

Being able to identify the activities that trigger your child’s symptoms, understanding their experience and watching how your child moves will enable your physio to work with you to formulate a plan. This plan should be collaborative and based around your child’s goals such as getting back to school, sport or hobbies. Having pain or fatigue can be so annoying and make moving and doing things difficult. But with chronic conditions, waiting for the pain or fatigue to go away before you get back into things can be an endless waiting game. Your physio will help you get back into doing things in a way that is meaningful, fun and supported.

Your physio may also provide education around:

  • Symptoms such as pain and fatigue and potential triggers / aggravators
  • Strategies on how to bring awareness to and strategies to minimise triggers and aggravators
  • Why your child may be experiencing pain.
  • How best support your child and their pain journey through supportive language in a progressive mindset

Your physio will also work hard to understand where your child’s physical function is at present and work out a plan to build on their activity level, strength, balance, movement control and most importantly, function over time. Your physio will support your child (and you!) with a plan for flare ups or set backs.

Other team members who your physio may recommend supporting you are

  • An Occupational Therapist, who assists your child to minimise the impact symptoms may have on sleep, school and relationships
  • A Dietician to understand your child’s nutrition needs whilst they are growing and create plans to support and meet these needs
  • A Psychologist to build coping skills and resilience and manage mental health symptoms such as low mood, stress or anxiety. This is important as often these symptoms are contributing to or exacerbating your child’s ability to engage in the physical rehab.

At Western Kids Health we run specialised groups in conjunction with the Arthritis & Osteoporosis Association of WA, including group hydrotherapy and strength and conditioning classes.

Hydrotherapy and physical conditioning for children with conditions like Juvenile Idiopathic Arthritis is safe and effective. Building strength through range is essential to keep your joints healthy. Your physio will work with you to help your child understand their body’s reactions and sensations as they try new activities. This will help your child build their capacity and understanding of body awareness. Your physio will help explore what movements and types of exercise work best for your child’s body, and most importantly making it fun!

You should see improvements over time with the right support and if you aren’t seeing those improvements, or your child isn’t reaching their goals, please discuss this with your therapy team.

Contact our free national Help Line

If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, or accessing services be sure to call our nurses. They’re available Monday to Thursday between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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13/Oct/2022

We get asked this question a lot! But unfortunately, it’s not a simple ‘yes’ or ‘no’ answer.

Arthritis is a general term used to describe over 150 different conditions. The more accurate name for them is musculoskeletal conditions, as they affect the muscles, bones and/or joints.

They include osteoarthritis, back pain, rheumatoid arthritis, fibromyalgia, gout, polymyalgia rheumatica, lupus, osteoporosis and ankylosing spondylitis.

Around 7 million Australians live with a musculoskeletal condition, including kids. So can you avoid becoming one of them?

Maybe? Not really? It depends? 🙄

Because there are many different types of musculoskeletal conditions, the answer depends on various factors.

For conditions like rheumatoid arthritis, juvenile arthritis, ankylosing spondylitis, and lupus, we don’t really know their cause. Without knowing the cause, it’s hard to prevent something from occurring.

What we do know is that they’re autoimmune conditions. That means they occur due to a malfunctioning immune system. Instead of attacking germs and other foreign bodies, the immune system targets joints and healthy tissue, causing ongoing inflammation and pain. We don’t know why this happens, but scientists believe that a complex mix of genes and environmental factors is involved.

At this stage, we can’t change a person’s genetics to prevent them from developing an autoimmune type of arthritis, or conditions like osteoporosis and Paget’s disease, which are also linked to genetics. Many musculoskeletal conditions also become more common as you get older and are more common in women.

Other health issues, such as diabetes, kidney disease, coeliac disease, and even other musculoskeletal conditions 😫, can also increase your risk of developing a musculoskeletal condition. For example, chronic kidney disease can increase your chance of developing gout, and rheumatoid arthritis increases your risk of developing osteoporosis and fibromyalgia.

So that’s the bad news.

The good news is there are things you can do to reduce your risk of developing a musculoskeletal condition. Or, if you develop one, reduce its impact and severity.

Maintain a healthy weight

Excess body weight puts more pressure on your joints and increases the stress on cartilage, especially in weight-bearing joints like your hips, knees, and back. For every kilo of excess weight you carry, an additional load of 4kgs is put on your knee joints.

In addition to putting added stress on joints, fat releases molecules that increase inflammation throughout your body, including your joints. Being at a healthy weight reduces this risk.

Being overweight or obese is strongly linked to developing osteoarthritis (OA), most often in the knees. Hand OA is also more common in people who are overweight.

Back pain and inflammatory conditions such as gout, rheumatoid arthritis, and psoriatic arthritis have also been linked to being overweight.

If you have a musculoskeletal condition, maintaining a healthy weight, or losing weight if you’re overweight, can decrease your pain, allow you to become more active, and decrease your risk of developing other health problems like heart disease and diabetes.

Quit smoking

As well as the obvious links to cancer and lung disease, smoking’s linked to back pain, neck pain, rheumatoid arthritis and osteoporosis. Smoking also causes fatigue and slower healing, which can make pain worse. And it can make some medications less effective.

So quitting smoking has many health benefits. Within weeks of quitting, you’ll breathe easier and have more energy, making it easier to exercise and do your day-to-day activities. Find out more about the impact of smoking and ways to quit for good.

Stay active and exercise regularly

Regular exercise is vital for overall good health and keeps you fit, independent and mobile. Being active helps keep your muscles, bones and joints strong so that you can keep moving. It reduces your risk of developing other conditions such as osteoporosis, heart disease, diabetes and some forms of cancer. It boosts your mood, benefits your mental health, helps with weight control and improves sleep.

Having strong muscles is also essential to reduce your risk of falls.

Look after your mental health

Mental health conditions can increase the likelihood of developing some musculoskeletal conditions. For example, people with depression are at greater risk of developing chronic back pain. And living with a painful musculoskeletal condition can have a significant impact on mental health.

If you’re living with anxiety, depression, or another mental health condition and feel that you’re not coping well, it’s important to seek help as soon as possible. This will ensure you don’t prolong your illness and worsen your symptoms. It becomes harder and harder to climb out of a depressive episode the longer you wait. Similarly, the longer you put off seeking help for anxiety, the more anxious you may become about taking that first step.

There are many different types of treatment options available for mental health conditions. The important thing is to find the right treatment and health professional that works for you. With the proper treatment and support, they can be managed effectively.

Get enough calcium and vitamin D

Calcium and vitamin D are essential to building strong, dense bones when you’re young and keeping them strong and healthy as you age.

Getting enough calcium each day will reduce your risk of bone loss, low bone density, and osteoporosis.

Calcium is found in many foods, including dairy foods, sardines and salmon, almonds, tofu, baked beans, and green leafy vegetables.

Vitamin D is also essential for strong bones, muscles and overall health. The sun is the best natural source of vitamin D, but it can be found in some foods.
If you’re unable to get enough calcium or vitamin D through your diet or safe sun exposure, talk about calcium and/or vitamin D supplements with your doctor.

Protect your joints

Joint injuries increase your risk of getting OA. People who’ve injured a joint, perhaps while playing a sport, are more likely to eventually develop arthritis in that joint. So it’s important to protect against injury by:

  • maintaining good muscle strength
  • warming up and cooling down whenever you exercise or play sport
  • using larger, stronger joints or parts of the body for activities, for example, carrying heavy shopping bags on your forearms, rather than the small joints in your fingers
  • using proper technique when exercising, for example, when using weights at the gym or when playing sports, especially those that involve repetitive motions such as tennis or golf
  • maintaining a healthy weight
  • avoiding staying in one position for extended periods
  • seeking medical care quickly if you injure a joint.

Drink alcohol in moderation

Excessive alcohol consumption contributes to bone loss and weakened bones, increasing your risk of osteoporosis. For people with gout, drinking too much alcohol, especially beer, can increase your risk of a painful attack.

It can also affect your sleep, interact with medicines, and affect your mental health. To find out more about the risks of drinking too much alcohol and how you can reduce your alcohol intake, read ‘Should I take a break from booze?’.

Manage stress

While stress on its own is unlikely to cause someone to develop a musculoskeletal condition, chronic stress or a stressful event may be a contributing factor, especially with conditions such as fibromyalgia and back pain.

It can also cause issues with sleep, mood, increase pain, and make you more prone to flares if you have a musculoskeletal condition. It can then become a cycle of stress, poor sleep, pain and more stress. And this can be a difficult cycle to break.

But there are things you can do to deal with stress. Try relaxation techniques such as meditation, breathing exercises and visualisation, and avoid caffeine, alcohol and cigarettes.

Talk to someone – whether it’s a family member, friend or mental health professional, about what’s stressing you out so you can deal with it.

Talk with your doctor

If you’ve been experiencing joint or muscle pain, it’s important that you discuss your symptoms with your doctor. Getting a diagnosis as soon as possible means that treatment can start quickly, reducing the risk of joint damage and other complications.

Final word

While at this moment in time, we can’t absolutely 100% prevent ourselves from getting a musculoskeletal condition, the good news is that early diagnosis and treatment will give you the best outcomes.

Treatments for many of these conditions have come a long way in recent years, and most people live busy, active lives with musculoskeletal conditions. 😊

Call our Help Line

Call our nurses if you have questions about managing your painmusculoskeletal condition, treatment options, mental health issuestelehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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18/Nov/2021

Written by Rachel Lea

During the 32 years of living the life of a Lupus Warrior, I’ve come to liken the feeling of battling lupus to the principles of the board game Snakes and Ladders. When the dice rolls, you take the number of steps forward that the dice dictates. Literally one step at a time. When you’re feeling well, and your lupus is under control, you may even land on a ladder and climb up the board a little bit further. When that’s happening, you feel truly happy, as you’re able to maintain a sense of balance and stability. It just feels good.

But then the game can change without warning, and the dice can roll towards a snake. When you hit a snake, it boldly raises its head and hisses at you. Taunting you. Because you know what’s coming. You’ve suffered another setback, another lupus flare. And so you begin to slide. You slide all the way down the back of that slippery snake, sometimes to the bottom of the board. That soaring happiness dissipates as you realise you have to begin the game all over again, and fight your way back up to the top of the board. This is how the game of lupus is played each day. Over and over and over again. At some point, you’ll always fall back down. Why? Because lupus always wins.

So the never-ending tweaking of medication takes place, whether it be increased steroids or methotrexate. This’ll require months and months of tapering back to the dose at which I was originally controlling my lupus. Before that flare took me down. My symptoms of extreme fatigue, joint and muscle pain, fevers, migraine-like headaches, mouth ulcers and hair loss are being treated by these medicines. It’s draining. And bloody frustrating! Particularly when I felt I was managing my lupus and overall health really well, and then, boom!

After thirty-two years of experiencing such flares, I’ve grown to realise that the only way to fight back is to simply let go. Let go of everything. Place myself in a protective bubble and focus on me. Hope that the drugs kick in quickly and move with the pain and discomfort the best way I can. I’ve grown to learn that it takes strength to surrender and put trust and faith in the universe. That even when I’m struggling like this, I’m exactly where I’m meant to be. I know this because when I’ve been too stoic, trying to rise above the pain and fatigue, the resulting flare has been longer and more challenging to overcome.

I grew to learn very early into my diagnosis the benefits of being very gentle and kind to myself. If that means having a teary and a good sook, so be it. If that means I’m in bed for days or even weeks, I’ve no choice but to give in. If it means I’m back on the higher doses of medications, with all of the nasty side effects that come with them, then that’s just the way it is. I just have to roll with it as best I can. I need to let go so I can get back on the game board again and keep rolling the dice.

I’m a kinder, more considerate and less judgmental person because of lupus. I’m more patient and adaptable when faced with new challenges. I’ve recognised that being able to persevere and be resilient in the face of uncertainty is a gift. Self-acceptance cultivates much inner peace, but when my acceptance of life with lupus is tested, I’ve learned to respect what this disease is and what it can do. If I wage a war against myself and push through without enough rest and respite, I’ll be causing more inflammation, more damage, and undo all the good I’m trying to nurture within my body. And that’s no good for me in the short or long-term. I’m managing a disease without a cure, one that’s unlikely to leave me anytime soon.

Not being well enough to continue my beloved vocation of working as a VCE secondary school teacher, I’m currently on another journey of personal growth and acceptance. In addition to having lupus, I’ve also been battling fibromyalgia for 8 years. As I became sicker, teaching became more challenging than usual, even when working part-time hours. I was also working within a combative, negative work environment. I was constantly asking myself, ‘how can I keep moving forward, finding hope and purpose as a chronically ill person in a toxic work environment like this?’ One where people strongly resisted the opportunity to invest more time and effort into creating greater goodwill and positive change that everyone could benefit from. How long could I endure the frustration of working like this and be in the best health possible? And ultimately, the question which intrigued me the most, ‘how do other people, like me, who have invisible chronic illnesses, cope in stressful, challenging workplaces? How do they find their way in the world when their pain is invisible to those around them? ’

With too many lupus flares to bounce back from and a working environment that wasn’t likely to improve, I resigned from my teaching job. It’s been a very isolating, extremely lonely and sad time for me. However, over time I’ve been able to reflect on the challenges of having lupus and working in a difficult work environment. This has resulted in my book ‘Lupus = Lift Up, Persevere, Use Strength’.

I’ve written my book in 3 parts. The first part, ‘Lift Up’, examines the 3 long years it took to diagnose my lupus. I was symptomatic at age 14 and diagnosed at 16. I describe the social, emotional and physical impacts of being ill as a teenager, its effects on my parents and family, and the stress of misdiagnosis and experimental treatment along the way. In part 2, ‘Persevere’, I discuss the struggles of having lupus while finishing school, university and the fear of entering the workplace as a secondary school teacher with a chronic illness. In the final part, ‘Use Strength’, I share the challenges of life in the workplace with an invisible illness and how I’ve tried to maintain hope and perspective.

It’s my greatest hope that my book can offer companionship and unity to fellow Lupus Warriors, chronic illness fighters, their carers and loved ones. I also hope to generate greater understanding and awareness of lupus, and cultivate more compassion and empathy for the challenges of living with a chronic illness. In all of the teachings that having lupus continues to bring, I know I must keep putting into practice what I’ve learned in being able to surrender and embrace the unknown with more courage, grace and acceptance.

Contact our free national Help Line

If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services be sure to call our nurses. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.


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28/Oct/2021

Photo by AUSVEG

Caitlin, a fifth-generation farmer from the northwest coast of Tasmania and Australian Apprentice of the Year 2020, shares her story about living with arthritis.

I was diagnosed with arthritis when I was 12, turning 13, and in grade 7.

I remember my first attack very well. We were on the Spirit of Tasmania heading over to Werribee for the 2011 Interschool Nationals (Equestrian) and on the boat I had a really sore hip. By the following night, the pain had become unbearable, so mum took me to the hospital. The staff took x-rays but couldn’t find what was causing my pain.

I was then transferred to the Royal Children’s Hospital, where I spent the next three days. After a series of ultrasounds and an MRI, they found a heap of fluid on my hip and diagnosed post-viral arthritis. Even with this diagnosis, I went on to compete and hobble around on crutches at Nationals!

When I got home to Tasmania, I went to my GP and was referred to a rheumatologist. It was then I was diagnosed with severe idiopathic rheumatoid arthritis. Then the journey began…???

Has your condition or living with pain impacted your social life, work, friends etc?

It had a huge impact on the rest of my high school years. I took prednisone daily for two or so years, which made me extremely puffy in the face. The people who knew what was going on were kind, but there were also some unkind people. It affected my confidence, I became depressed, moody and I didn’t even want to ride my ponies for a while.

Also, because I usually competed every weekend and rode a lot, I never really felt that I belonged with a particular group at school. And so, towards the end of school, I was quite happy to do homework in the art rooms at recess and lunch. I had some friends, but none who understood what it was like for me, or my lifestyle with the horses and farm, except for my best friend, who lived an hour away.

Since grade 12, life has been on the up and up. I’ve found my ‘people’ by developing greater friendships through horses, joining Rural Youth and getting involved with local agricultural networks where I fit in with like-minded people. Sometimes I’m exhausted and not up to some activities, but I know how to balance my life to keep myself healthy (most of the time! ?) and to be honest with how I’m feeling and when I need to take a break.

Work-wise, working for myself and my family is very handy as I can be more flexible around workload and how I do things. My family is super supportive and will help me in any way they can if I get sick, have an attack or need to go to appointments.

What’s life like living with arthritis?

Every day is different! When I was younger and trialling a lot of different medications, it was a rollercoaster to say the least! I would be nauseous all the time if I was on methotrexate, and tired to the point where I would fall asleep not long after getting home from school. Touch wood, it seems to be somewhat under control now.

I’ve found Actemra (tocilizumab) to be the best medication for me so far. I have an infusion at the hospital once a month. However, I’m starting a new medication next week due to the worldwide shortage of Actemra as they’ve been using it to treat people with COVID. So we’ll see how that goes, as it requires me to go back on to methotrexate.

I could’ve opted for a different medication, such as a daily tablet or self-injection, but I wasn’t a fan of those options. I self-injected twice weekly for a few years, and in the end, I couldn’t mentally do it anymore. I’d get worked up about having to do it, and I found the medication wasn’t working as well. With my busy lifestyle, sitting down in the hospital for a couple of hours once a month actually suits me quite well!

How does your condition impact working and running a farm?

Hydraulics were invented for a reason! Don’t get me wrong, it’s still a very physical job, but I enjoy it as it helps me stay fit and active.

When I’m fitter, I find I don’t get as sore, or I’m at least able to handle more exercise. I also find it helps me with my mental health too. I’m lucky to be able to run two of my own businesses. One through coaching dressage and beginner riders and creating freestyle music. The other is the farm with my partner that we lease from my grandparents. I find that long days in the tractor and very repetitive movements make me stiff and sore, but I’m sure many others find that as well.

Does horse riding help?

It helps in the fact that it takes my mind off the pain while I’m riding. I do feel it afterwards though! On the days I’m in so much pain that I struggle to walk, I can ride, and the horse can become my legs for an hour. When I was younger, I was graded as a para-athlete due to the effects of my arthritis. This wasn’t a bad thing as it allowed me to make so many connections with other para-athletes. I realised that I didn’t have it bad at all, and those I felt had it worse than me were often more determined and more able than some able-bodied riders I know! The only barrier is our mind and what we think we can do. So that really allowed me to push myself to be a better rider and then pass that on when teaching children or adults with learning or physical disabilities.

How important are strong connections – e.g. family, friends, partner – when you have arthritis and chronic pain?

Having a supportive team around you is essential. I’m lucky to have a very supportive family, and my partner Owen is amazing.

There can be days when I need help with basic things like getting undressed, getting into the shower and putting my hair up or the like. For the most part, I’m totally independent, but I know that when I am going through an attack, it won’t be pleasant, and I’ll need to rely on that support.

I also have Hashimoto’s disease and fibromyalgia, so it all hits my immune system hard. From restless legs to feeling pain for the smallest of things, it can be really frustrating. So to have people to comfort you when it gets too much is really important. Sometimes we all need a hug and to be told it’s all ok to get us through the day. ?

My best friend for the last 10 years has seen me go through everything, from being really sick to the healthiest I’ve been and everything in between. We’ve travelled overseas and look forward to more adventures, hopefully soon.

I first told my story publicly on Landline earlier this year. I had messages from people from all over thanking me for sharing my story and inspiring them to go for their dreams too. So to know that my story has helped others makes me so happy!

Do you have any tips for other people who have arthritis or other musculoskeletal conditions?

The biggest piece of advice that I can give is finding what makes you happy. When I’m focused, the rest seems to blur out. Get to know your body and what you can handle, find people in similar situations and ask them as many questions as you can, and then be that person for someone else. We are all in this together and shouldn’t feel alone! There’s no reason we can’t do the things we wish to do most in today’s world.

Contact our free national Help Line

If you have questions about managing your pain, your musculoskeletal condition, treatment options, mental health issues, COVID-19, telehealth, or accessing services be sure to call our nurses. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

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27/Aug/2020

…in books, movies and TV?

One in three people lives with a musculoskeletal condition. 1 in 3. But it was almost impossible to find any decent books, TV shows or movies that feature realistic portrayals of people living with these conditions, or living with chronic pain. Even when you extend it to people living with chronic illness in general, which is an even bigger proportion of the community, it’s a tough slog through mediocrity.

I was astounded at the lack of characters living with these conditions. And when I did find some, I found many to be annoying, improbable and insulting.

Many of the stereotypes used include:

  • the person addicted to pain medications
  • the person who’s just too good to be true – nothing turns their frown upside down because they’re amazingly brave and stoic – they conquer all
  • the person who’s angry all the time, hates the world and everyone in it.

Few real people are like this all the time. Some elements may appear in our personalities and our lives, but no one is this one dimensional. So it’s sad that this is the way we’re portrayed.

It was also really depressing to see how some conditions – particularly fibromyalgia – are disparaged and often treated as a punchline. That’s so unfair.

So here’s my call to action – before I even delve into the stories I did find – let’s get our stories out there!

We can create stories and characters that are multi-faceted – we know people have more than one side or feature – because we are those people. We’re good, bad, positive, negative, strange, unique, parents, siblings. We work, we study, we get sad, we love, we hurt. We are and do all of these things, often at the same time! There’s so much more to a person that an addiction or stoicism.

So use whatever medium inspires you – fiction, film, photos, art, humour – and share it with us. We’d love to see it.

And if you’ve come across some great characters that we’ve missed in this list – let us know. We’ll add them to our blog.

Ok, rant over.

Here’s the list of the books, movies and TVs I did come across that featured more interesting characters. And a confession here –I’ve only seen/read a few, but have added lots to my enormous ‘must watch list’ and my towering ‘to be read’ pile.

Renoir (movie)

Based in the summer of 1915 in the French Riviera, this movie features an ageing Pierre-Auguste Renoir (Bouquet), dealing with the loss of his wife, the effects of rheumatoid arthritis, and the terrible news that his son Jean (Rottiers) has been wounded in action. But then a young girl (Théret) enters his world and Renoir is filled with a new, unexpected energy as the beautiful Andrée becomes his last model. Then Jean returns home to recover from his wounds and queue the love story.
Director: Gilles Bourdos
Year: 2012
Stars: Michel Bouquet, Christa Théret, Vincent Rottiers
Language: French (English sub-titles)
IMDB: https://www.imdb.com/title/tt2150332/

Words and pictures (movie)

In this romantic comedy, an art instructor (Binoche) with rheumatoid arthritis and an English teacher (Owen) form a rivalry that ends up with a competition at their school in which students decide whether words or pictures are more important.
Director: Fred Schepisi
Year: 2014
Stars: Clive Owen, Juliette Binoche
IMDB: https://www.imdb.com/title/tt2380331/?ref_=fn_al_tt_1

The Good Doctor (TV)

This popular TV medical drama revolves around young surgeon Dr Shaun Murphy (Highmore) who has autism. In season 3 one of his colleagues, Dr Morgan Reznick (Gubelmann) opens up to senior surgeon Dr Glassman (Schiff) about having been diagnosed with rheumatoid arthritis. She needs his help to get a cortisone injection so she can perform her first surgery. She discusses with him her concerns about how the other surgeons may assume RA will affect her ability to operate and do her job.
Creator: David Shore
Year: 2017-
Stars: Freddie Highmore, Richard Schiff, Fiona Gubelmann and many others.
YouTube: Dr Reznick wants Dr Glassman to keep her condition a secret

The Big Sick (movie)

Written by Emily V Gordon and her husband Kumail Nanjiani, this romantic comedy is loosely based on the real-life courtship before their marriage in 2007. While they were dating Gordon became ill and was put into a medically induced coma. She was later diagnosed with Still’s disease.
Director: Michael Showalter
Year: 2017
Stars: Kumail Nanjiani, Zoe Kazan, Holly Hunter, Ray Romano
IMDB: https://www.imdb.com/title/tt5462602/

Five feet two (doco)

This documentary follows Lady Gaga as she gets ready to release her fifth album and struggles with the physical and mental ups and downs. During the documentary she talks openly about her fibromyalgia.
Director: Chris Moukarbel
Year: 2017
Stars: Lady Gaga
IMDB: https://www.imdb.com/title/tt7291268/

Maudie (movie)

This romantic drama is based on the real life story of Canadian folk painter Maud Lewis (Hawkins). Maud was born in 1903 and diagnosed with juvenile arthritis as a child. This movie tells the story of love of painting, her marriage to Everett Lewis (Hawke) and her recognition as an artist.
Director: Aisling Walsh
Stars: Sally Hawkins, Ethan Hawke
Year: 2016
IMDB: https://www.imdb.com/title/tt3721954/?ref_=fn_al_tt_1

Cake (movie)

Cake tells the story of Claire (Aniston) who struggles with chronic pain and depression after a car accident that also killed her son. She becomes addicted to pain killers (sorry) and joins a chronic pain support group. Through this group she meets Nina (Kendrick) who later commits suicide. The story goes on to explore Claire’s relationship with Nina’s husband (Worthington) and son, her relationship with her estranged husband and how she tackles physical and emotional pain. https://msk.org.au/persistent-pain/
Director: Daniel Barnz
Stars: Jennifer Aniston, Anna Kendrick, Sam Worthington
Year: 2014
IMDB: https://www.imdb.com/title/tt3442006/

Cursed (YA book)

As if her parents’ divorce and sister’s departure for college weren’t bad enough, fourteen-year-old Ricky Bloom has just been diagnosed with juvenile arthritis. Her days consist of cursing everyone out, skipping school–which has become a nightmare–daydreaming about her crush, Julio, and trying to keep her parents from realizing just how bad things are. But she can’t keep her ruse up forever. https://msk.org.au/juvenile-idiopathic-arthritis/
Author: Karol Ruth Silverstein
Year: 2019
Publisher: https://www.penguinrandomhouse.com/books/588565/cursed-by-karol-ruth-silverstein-author/

Sick kids in love (YA book)

Isabel has one rule: no dating. All the women in her family are heartbreakers, and she’s destined to become one, too, if she’s not careful. But when she goes to the hospital for her RA infusion, she meets a gorgeous, foul-mouthed boy who has her rethinking the no-dating rule and ready to risk everything.
Author: Hannah Moskowitz
Year: 2019
Publisher: https://www.panmacmillan.com.au/9781640637320/




Musculoskeletal Australia (or MSK) is the consumer organisation working with, and advocating on behalf of, people with arthritis, osteoporosis, back pain, gout and over 150 other musculoskeletal conditions.

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