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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.

More to explore


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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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