More than 10 years ago I was fortunately diagnosed with a rare type of rheumatoid arthritis called ankylosing spondylitis (AS). It's rife in my back, wrists, feet and pelvis.
I say fortunately because after years of crippling pain and countless visits to doctors, osteopaths, acupuncturists and rheumatologists — not to mention thousands spent on MRIs and x-rays — I finally had an answer. I'd also spent years trying to tell friends and family that I couldn't go to the cinema or on long car trips because after 20 minutes, the pain in my back would become excruciating.
I'd spent years not being able to partake in high-impact sports, as well as having to tell my boss I couldn't work, as I literally couldn't walk.
All those years of endless, at times, breath-taking pain, had finally been given a name.
The day I was given my diagnosis, I remember leaving the specialist's office and casting a horrified look around the waiting room and at his hunched-over 80-year-old patients, who all kind of looked like I felt. Was this my future?
Clutching the roughly written prescription for more intense anti-inflammatories, I flipped through the glossy brochure I'd also been handed. It included a photo of a group of healthy-looking 21-year-olds sitting in a park.
"As if they had ankylosing spondylitis," I thought bitterly to myself on the bus ride home. If they did, they certainly wouldn't be sitting cross-legged laughing about it — that kind of seated position was way too uncomfortable with AS.
In the early stages of my arthritis, there was nothing to show for what I was experiencing. The pain was invisible to others. (Supplied)
An invisible disease
Ankylosing spondylitis is a type of arthritis characterised by long-term inflammation of the joints along the spine, typically where the spine joins the pelvis.
Joyfully, it may also affect other joints (namely all of them), with the affected areas worsening over time.
Although the cause of AS is unknown, it is believed to involve a combination of genetic and environmental factors. There is no cure. Sadly, arthritis is a (mostly) invisible disease.
In the early stages of AS, where my vertebrae were in the process of fusing, there was nothing to show for what I was experiencing. The pain was invisible to others.
These days, the disease has progressed and my feet are "Exhibit A" if anyone ever asks what it's like to live with crippling arthritis. I generally make a point of not letting people see my feet because not only have they become the most painful side-effect of my condition, they're also the unsightliest.
I'll wear boots and enclosed shoes, even in summer. Putting thongs on is a joke anyway, as they can't really get past the top part of my mangled toes. If I'm at the beach, they're under the sand.
Shoe shopping requires a stiff drink to face the ordeal of trying on 56 pairs of shoes that refuse to sit on my distorted feet, all while enduring looks from the shop assistants when they catch a glimpse of my gnarled toes and jutting foot bones.
Shoe shopping requires a stiff drink to face the ordeal of trying on 56 pairs of shoes that refuse to sit on my distorted feet.(Supplied: Prudence Clark)
I won't let it hold me back
Yes, I know there is more to life than aesthetics but it's the pain that really drives me to despair.
Sure, AS affects my back and there are days where I can barely walk. However, I've always managed to push through. Now, after 20 minutes of walking, it feels like the ground has turned into burning broken glass.
But I refuse to give in to it. AS has already prevented me from participating in sport so let me tell you, it's not going to stop me from bloody walking.
Some days, when I'm selfishly wallowing in self-pity, sick of the exhaustion that accompanies constant pain, I wish there was some kind of plaster cast I could wear or cane I could carry to incite sympathy from the frustrated people I hold up as I hobble.
At times, it would be easy to curl into a ball (although, not literally, my back shudders at the mere thought) and surrender to the pain but I refuse to be a victim.
I remind myself, almost hourly, that there are people out there worse off than me and I should be lucky to be able to do what I can.
I want to be able to run around with my son
It's difficult to explain to someone who has never experienced chronic pain before how all-consuming and downright depressing it can be.
I worry about the future. I want to be able to run around with my active son but I can barely walk at the end of the day, so God knows what I'll be like in a few years' time.
For now, it's all about staying positive and reminding myself of the cliched but oh-so-true expression, "Mind over matter".
Next time we're out together and I ask if you mind sitting at a high table so I can stand, or if you notice I always have my feet buried deep in the sand, just know that I'd do anything to be lounging cross-legged under a tree without a care (or iota of back pain) in the world.