By Anna Wilson – EULAR Edgar Stene Prize essay competition, runner-up in the UK national competition
After almost nine years of increasing intensity, the pain throughout my body was becoming unbearable. I vividly remember arriving at my doctor’s appointment that day to receive my blood test results, my fingers tightly clutching a list of symptoms.
“I know it sounds like I’m a hypochondriac,” I began awkwardly, “but I get inflamed eyes, rib cage pain, lower back spasms and stabbing in my hips that is so bad I struggle to walk in the morning. I read online about ankyo…spindelly… something. Is there a chance it could be due to that?”
“Your bloodwork has shown you don’t have the HLA-B27 gene, and you’re female,” the doctor responded. “It’s not ankylosing spondylitis. Lose some weight and see if it helps.”
Deflated, I left the doctor’s surgery. I limped into the shop next door and purchased some groceries before slowly heading home. The ten stairs leading up to my flat door seemed so daunting, they may as well have been Mount Everest. Gripping tightly to the banister for support, I attempted the first step upwards. Suddenly, the familiar pain took my breath away – the feeling in my back like I had been stabbed by a jagged fork that was twisting my raw nerve endings around it like spaghetti. I yelped and collapsed, hearing a milk bottle crack as I dropped it. I soon found myself sobbing on the staircase, drenched in milk, unable to move with my back in spasm. I remember whispering on repeat ‘I just can’t do this anymore’. I was there so long that the automatic hall light switched off, plunging me into darkness.
I remember any small fragment of hope I had for the future disappearing in that moment. Before my treatment began, there were times where the pain was so all-consuming that it was difficult to envision a future at all, let alone have hope for what that future could contain.
I am so grateful to the friend who came to rescue me from the staircase that afternoon, and who pushed me during the challenging times to keep searching for an answer. Thanks to them, a few months later I found myself in the office of a wonderful consultant rheumatologist, where I was told “You have ankylosing spondylitis, and there is so much we can do to get your pain under control.”
I can only imagine how alarming it must have been for my consultant to see his first patient of the day break into guttural, heaving sobs and ramble incomprehensively with gratitude. What he didn’t realise is that his nine-minute diagnosis came at the end of nine years of constant pain, and that he was offering me the first shred of hope I had received in almost a decade.
Being treated with biologics has genuinely transformed my life, and through the elixir of wondrousness that I inject into my body every two weeks, a world of hope has opened before me in tiny magic moments.
Firstly, treatment brings with it the utter liberation of living a life with diminished levels of pain. I still recall the endless, bleak nights of exhaustion as the cage of costochondritis tightened like a corset of knives across my lungs, stopping me from sleeping. Since starting my treatment I now don’t wake at night at all, and consequently get through the day without much fatigue. When I wake, it doesn’t take me half an hour to get out of bed, and I don’t need to clutch the walls to get to the bathroom and shower. It wasn’t until this pain started to disappear that I realised how small my world had become pre-treatment, and how much of my future I had unconsciously abandoned due to despair and a loss of hope.
Treatment has changed everything. Without daily fatigue rendering me useless after 3pm, I found myself pursuing promotions at work. Career opportunities I never could have envisaged have blossomed before me.
Without agonising inflammation from sitting in a car or plane seat for more than an hour, I can now (pandemic permitting!) travel the world. Thanks to treatment I have been able to fulfil dreams that used to feel like wishful thinking. I climbed a mountain in Iceland and witnessed the Northern Lights dancing across the sky – three years ago I wouldn’t have been walk through an airport without struggling. It has shown me that what I hope for in the future is still within my reach.
One of the most profound ways my hope has expanded because of treatment can be found in my relationships with others. I remember years ago my four-year-old nephew kicked a ball to me, which I was unable to return as my hip pain was so intense. He apologised and said that he ‘forgot Auntie Anna can’t play.’
It was heart-breaking to think that the pain had impacted every area of my life, and even my ability to have fun with my family was suffering. Last year, thanks to my Adalimumab, I celebrated my nephew’s seventh birthday, and together we kicked balloons around the room whilst dancing wildly. It is thanks to my treatment that I can expect my future will be filled with these little moments of magic that mean so much.
Recently, many people have said they feel sorry for me because my medication renders me immunocompromised and means I ‘have to be trapped inside’ throughout the pandemic. What I can never fully explain is that my treatment has saved me from an entire lifetime of being ‘trapped inside’ my own body. Shielding now is a small price to pay for being able to fully embrace my pain-free future in a post pandemic world.
Whilst my own future is now filled of hope, I now wish the same for others. My restored hope for the future didn’t just come from my injections, but from the incredible treatment and support I have been given by the rheumatology team that cares for me. It came from the confirmation that what I was experiencing was real, and that my pain could be managed. I hope in the future we can continue raising awareness around RMD conditions so that no one suffers years of despair and hopeless due to a lack of diagnosis and delayed treatment.
When years ago I whispered on those stairs ‘I just can’t do this anymore,’ I meant it. Prior to treatment for my ankylosing spondylitis, I was genuinely debating whether it was worth staying to see my future, let alone that it would be a future worth getting excited about.
I can only hope that all others with the condition are given the same opportunity to experience the tiny magic moments that mean so much and collectively give so much hope for a brighter tomorrow.