AOSD: The Dragon

1.5 in a million they said. You’re 1.5 in a million if the dragon finds you. 1.5 in a million if they’re smart enough to see. When the illness is so rare most doctors have never heard of it, the path to recovery is ice beneath the dragon’s claws. I was one of the lucky ones.

When the dragon roars once, the mystery flare appears. Something unexpected, but no real cause for concern. Sometimes a little fainting spell, a stumble, a gentle pink mark. For me it was a swollen joint, unusual but not worth panicking over.

I sat upon a dining chair, watching my friends play games, as my ankle grew large and red at the dragon’s breath. They fought a dragon in their arena too, far different and more fun than mine. It took time for me to notice the swelling beneath my skin. There was no soreness, no sign at all until I looked down to see the strange sphere protruding from my leg. The coconut sized spectacle surprised me to say the least. It had to be from a bug bite, surely, or perhaps a prickly plant, easily missed. With no experience of allergies, it seemed a valid theory. I assumed antihistamines would be a simple fix.

Not wanting to interrupt the tabletop adventure, I kept this hidden until the night was done. While their battle ran with dice and maps, I was unaware mine had begun.

When the dragon roars twice, the knights are called in. My ankle was fine, but my knee had expanded and this time the discomfort was almost unbearable. I took a quick dip in the white tiled springs. Surely a warm bath would ease the agony. It did for a time, but a single step onto the fuzzy blue bath mat was all it took for a sharp strain to strip me of my consciousness. It wasn’t slow, the way passing out normally goes. There was no metallic taste, no static spots, no nausea. Just pain, then nothing at all.

The ER doctors prodded and poked but nothing was found. The dragon is good at hiding you see. It’s stealth check is off the charts. It wasn’t until my next visit that things were taken more seriously. Fire filled my veins, as an endless fever took hold, the burn blushing my skin in a patched blanket rash. Not itchy or raised, just there. The dizziness was enough to have eyes turn my way, but it was the tortured cries that broke through the morphine shield, worsening by the second, that filled their eyes with fear. Every test came back negative, every theory trumped. The dragon was winning, until my knight in rheumatological armour joined the fray.

He knew the dragon’s secret, it is invisible. An invisible illness.

No test can find it. No search can see it. No diagnosis can be made until every other test is run.

So they stabbed and jabbed, their needlepoint swords seeking some simpler foe to slay, ever hopeful that something else would show itself, but it never did. The dragon was my foe, and when treatment began, it grew mad.

When the dragon roars a third time, it’s life or death. Azathioprine was our first weapon of choice. The goal was to treat the symptoms since a cure is yet to be found. We could manage the symptoms until the dragon lost interest. I hoped with all my heart it would.

Battling the dragon had already damaged my pride. It’s a strange thing to enter your twenties and find yourself incapable of holding cutlery. Stranger still when it’s only for one night, the night of a dinner party. Life took on a whole new level of unpredictability, unable to plan as the pain jumped from joint to joint, never lingering on one for long. The only consistency came when darkness took the land and the dragon released a burning torrent of flame. Neither Sir Paracetamol nor Squire Ibuprofen of Chemistonia could take the fever down below 40℃. The only moments of respite were the lukewarm showers, and respite is perhaps too strong a word. The will to step into the icy waterfall grew thinner every night. When the shards hit and the shock takes hold all control is lost. Your body does what it will, dignity be damned, though this was not the worst of it.

The dragon’s ire raged as it tore my white cell warriors asunder. They thought cancer, friend to the mighty dragon, had taken hold or that the medicine might be traitorous, a double agent. My face grew pale, eyes withdrew, sunken, tired, and pea sized chunks of god knows what out of the skin on my face creating craters deserving of the name. While the pain persisted, my body shuddered, the fatigue of sleepless nights a body at war with itself setting in. No answer came for the question ‘why?’. No mortal men of science or faith could solve the mystery of my rapid decline.

All hope seemed lost, but armed with my specialist, and shielded by bulk-billing, I stared down the dragon, determined to survive. While other dragon fighters fought and fell, forced to choose between life’s typical necessities and much needed medicine, I was fortunate enough to take every test, trial every treatment, and revisit my rheumatologist without fear of waning funds. When I walked out of his office as the victor of a year long dragon war, I knew without a doubt were it not for what he did, what I had access to, I would never have gotten out of this alive.

I fear the dragon every day I’m in remission. It was months before my heart stopped racing as I approached the shower. Seven years on and I still steel myself when an ache hits my joints, a painfully common occurrence.

Adult Onset Still’s Disease is the dragon that confounds even the most skilled of physicians. The jumping joint pain, the lack of evidence, the way it turns the body against treatments and even against itself.

No two cases start the same, and no tests can say for sure. No treatments can be trusted. No cure is on its way. No one who wins their battle believes it won’t return one day.

With the rate of relapse greater than one in five, the risk of the dragon returning with a vengeance is impossible to ignore, but the battle changes people. Often for the worse physically. Still, survivours tend to find an inner strength they never knew they have. So many learn to listen to their bodies, because for so long they didn’t have the choice not to and that lesson carries over. On the other side, you realise how important it is to navigate the world in a way that is contrary to the hustle expected of us all.

I can only hope that those who have safely skirted the dragon’s path, unseen by his selective stare, are able to find the importance of pause. Pause when someone who looks fine uses a disabled parking space. You can’t always see their battle. Pause when someone younger stays seated on the bus. Their body may still shake when they stand. Pause when your body tells you it is tired. You deserve the rest.

Just pause, breathe, live.