Ankylosing Spondylitis had a lot to teach me.
It still does. They call AS the ‘young person’s arthritis’, and when I heard that, I hated it. I associated it with being limited, and I wanted to be unlimited. I’d travelled to Switzerland to compete for Australia, I’d won Australian and Oceania XC running titles, made the all time Australian fastest 5k and 10k list in 2018, and was on the podium at nordic ski races, I’d gathered the support of various sponsors and eventually made the move to the US to run in D1 NCAA. I really wanted to grab life by the horns.
AS affects 1-2% of Australians, that’s around 520,000 people, and is 3 times more common in men than women. (Empowered – Arthritis Australia, n.d.) 3.2 Million people in the US have AS. It’s most commonly diagnosed between 15-40, however 80% of patients will experience symptoms before the age of 30. (Ankylosing Spondylitis : Symptoms, Diagnosis and Treatment, n.d.) On average it takes more than 3 years after symptom onset for the diagnosis to be made in a teenager or young adult. It’s a small percentage of the population, and my chances of having it were small, but I did. The reality is the emotional and physical impacts are immense, particularly if you’re yet to be diagnosed (this condition can be tricky to spot), or having trouble obtaining treatment (it’s a lengthy process, as without government or insurance support, the injections cost around 60k a year).
I’ve forever known myself to be a go-getter, and somewhat of a perfectionist. Being diagnosed with AS challenged parts of who I am immensely. It was both a physical and emotional thing. The constant pain lingering felt like a constant ‘hum’, that at times made me feel like I should just give up. Then it would suddenly disappear for a couple of days and I’d really get moving again. The unpredictability of the pain made me feel unstable, and I really struggled with that. I love planning and chipping away at something, but AS didn’t allow for that. I had to learn to find stability in the instability. It was a microcosm for living life in general.
I spent from around the time of diagnosis, October 2021 to September of this year in disbelief that I actually had the condition. It sounds stupid right, like, if multiple doctors are pretty convinced, you should definitely think so too. There was always the chance it wasn’t, and that my anxiety around having potentially ‘ruined’ myself in my early years and being a washed up junior athlete would become the truth. Early treatment wasn’t working, which didn’t give me any further hope. All I could do is what I’ve always done, keep persisting and doing what I can do. I just knew it wasn’t what I had the potential to do; I felt limited. I’d known something wasn’t quite right long before the diagnosis, but neither I nor any doctor could pinpoint it. It took 4 years to really find out and more recently to begin to make a turn for the better, to feel like I could be that high-level athlete again.
It’s hard to pinpoint exactly when things started. However, we are pretty sure it was late 2018 at 20 years old, when very atypical tendon pain and other inexplicable injuries started to ravage my training and performance. I’d only been running properly for 2 years, coming from a nordic skiing background, and I hadn’t explored high volume training yet. I felt like I ‘survived’ through 2019 with some success on the Boise State University XC and Track NCAA program, however, things were never quite right, and by the time I started to feel a bit better, COVID hit and the next 2 years were spent living in a grey sort of state with my sport. I was stuck in the US with strict COVID laws in Australia preventing me from returning, and needing to finish my Master’s. It wasn’t until I returned to Australia in 2021 that things calmed down and I was properly diagnosed.
There currently isn’t a cure, however there are medications which can improve quality of life drastically. I began fortnightly injections called ‘Biologics’, in September this year and they have changed the game for me. I didn’t trust that they would, but I have less and less days in pain, less flare ups, and my mental health and performance has improved as a result.
Sometimes I still let fear get the better of me and wonder if I’ll ever compete as I did before this condition crept its way into my life. I recognize that this isn’t a helpful way to think, and that I have to actively practice living in the now more than trying to predict the future. I do know, whatever the case, AS has taught me to persevere and get myself out of the weeds, no matter the challenge. I believe I can handle it. I will keep persisting and being resilient.
Things tend to work out in some way or another, even if it’s hard to see when you’re caught in the weeds. Uncertainty, fear, anxiety – they are all easily magnified by the world around us. If we can learn to ride out the storms, ask for help, and simply do what we can do in these times…’chop wood, carry water’, it usually will work out.
It was in learning to deal with the realities of Ankylosing Spondylitis that I learnt how to handle disbelief and fear as an athlete. It honed my skills to find stability in instability.
“A person does not grow from the ground like a vine or a tree, one is not part of a plot of land. Mankind has legs so it can wander.”
― Roman Payne, The Wanderess
2023 is either here for you, or right around the corner. Life will continue to be like a moody ocean. Some days will be calm and clear, you’ll be able to see what’s beneath you, and likely what’s ahead. Other days will be a storm, with persistent waves that feel like they’ll never settle. If you can ride out the occasional storm, and harness the restorative energy in the calm, you have found stability in instability. You’ll get better at getting yourself out of the weeds. You’ll be like a tennis ball, you can bounce back.
Ankylosing Spondylitis : Symptoms, Diagnosis and Treatment. (n.d.). Johns Hopkins Arthritis Center. Retrieved December 30, 2022, from https://www.hopkinsarthritis.org/arthritis-info/ankylosing-spondylitis/
Empowered – Arthritis Australia. (n.d.). Empowered – Arthritis Australia. Retrieved December 30, 2022, from https://empowered.org.au/ankylosing-spondylitis/