It started with a niggle. An itchy pressure at the back of my pelvis: distracting, annoying, omnipresent. It was 2003 and I felt in my prime. I was studying hard, working as an expedition guide, loving life.
The itch became an ache.
The ache became a pain.
I talked to a relative about it. “Maybe it’s bursitis? I had that once.” A friend offered: “Perhaps you’ve got a bulging disc or a pinched nerve?”
When it was bad, I took a couple of paracetamol and accepted it. You do that: you’re busy, doctors are expensive, everything heals in its own time.
Only it didn’t.
After two years, it became obvious that the pain wasn’t going anywhere. In the mornings, I could barely get out of bed and white-hot shards of agony had spread to my lumbar spine. It felt like someone was stabbing a dirty great knife through my pelvis.
I wept when I was diagnosed; not solely out of shock or self-pity but also relief
Slowly, insidiously, it started to eat into my life.
I stopped playing sport, black days of depression ate me up and I watched my young, fit body degrade. Muscle spasms rippled across my spine and took my breath away at the most awkward of moments. I was always the last to leave a room: I didn’t want anyone to see me struggle to stand. I smiled a lot to hide the burning inside of me.
Sometimes the stabbing pain would leap up and bite me from behind. I’d be stuck to the spot, unable to take another step. I would have to lean up against a wall and phone a friend to come and get me.
Frustrated
I was frustrated. It affected my studies, my mood and my relationships. The pain ate me from the inside out.
Finally, debilitated, I saw a rheumatologist while studying in my home state of Tasmania. She put me straight on a steroidal drip and X-rays were taken, MRIs studied. My blood was sent to a lab.
I waited.
A week later, the results came in. I was diagnosed with a form of arthritis: ankylosing spondylitis (AS). Haven’t heard of it? Neither had I. And at 22 years old, it was just the sort of thing that didn’t belong in my life: an incurable degenerative autoimmune disease with a name like a subspecies of sea cucumber and just as unappealing.
I wept when I was told; not solely out of shock or self-pity but also relief. A name gave me something to tackle, a visible evil, a beatable foe to be conquered with the Holy Trinity: exercise, diet and drugs.
I collected papers on AS, kept up with new studies, sought to grasp what isn’t understood about the condition (a lot). I asked questions: what causes AS? Who gets AS? Why do I have AS? The answers are complicated, varied and disputed. I read up on biologic drugs, on corticosteroids, on IL inhibitors. I researched alternative treatments: the much-acclaimed no starch diet (didn’t work for me), prolonged antibiotic treatments (the gut destruction puts that in a “final resort” bracket) and radon therapy (the jury’s still out).
In 2017, after a year-long flare-up, it was clear that I needed to reassess. I wasn’t really on top of this condition. I wasn’t conquering it, I wasn’t beating it, I wasn’t even controlling it – it was controlling me.
Last November, 12 years after diagnosis, I could no longer manage my pain and went to see a GP in my much-loved adopted home – Ireland. She was knowledgeable, supportive, brilliant. It was a breath of fresh air. She added me to the urgent rheumatology waiting list. I felt buoyant. I'd fessed up that I needed help, not something that comes naturally to me, and someone had listened.
A couple of months later, I wondered what had happened to my urgent appointment. Clearly a mistake had been made. It was time to chase it up.
I called University Hospital Kerry and received a shock. I won't be seeing the only rheumatologist, Dr Muhammad Haroon (who threatened to resign last year over lack of support from the HSE), until 2019.
The waiting list is 14 months long.
Cast adrift
I popped a pill, went for a walk/hobble and took a deep breath. In place of my new-found optimism was a feeling of deflation, of abandonment, of being cast adrift with my hands tied behind my back.
And I am not alone.
In 2016, after the launch of Arthritis Ireland's WhyAreWeWaiting campaign, The Irish Times reported the cases of Emilie and Alison, who were two years down the list for an initial appointment to begin treating their debilitating conditions. The statistics reported made for grim reading: there were 12,600 people in Ireland waiting to see a rheumatologist.
Today, that figure is 30 per cent higher. As of February 2018, there are 15,285 people on rheumatology waiting lists in this country. Nine hundred of them are children. And more than one-third of these people will be waiting for more than 12 months.
No one in Ireland should be feeling like this. Ireland is a compassionate country, an engaged country
There are more than 100 types of arthritis, including osteoarthritis and a whole host of inflammatory diseases: rheumatoid arthritis, psoriatic arthritis, fibromyalgia, juvenile arthritis and my constant companion, ankylosing spondylitis. None of these conditions are curable and they are all associated with debilitating pain, loss of function and a dramatic reduction in quality of life.
According to Arthritis Ireland's head of communications and advocacy, Brian Lynch, arthritis is Ireland's largest cause of disability. One in three visits to a GP are related to it. "It costs the exchequer €700 million annually in early retirements and lost working days," Lynch tells me.
Knock-on effect
“People are frequently diagnosed with inflammatory arthritis when they are in the prime of their life: building careers and planning families. About 165,000 people with arthritis in Ireland are under the age of 55,” he says.
He emphasises that early diagnosis is key to a positive prognosis with arthritic conditions. “Be proactive in engaging with healthcare professionals,” he says, “unfortunately, if not treated appropriately, everyday activities can be adversely affected, which has a knock-on effect on people’s quality of life and their overall well-being.”
Of course, it’s easier said than done for those of us on The List. We wait and we wonder. Delayed treatment means another day stepping towards disability and not away from it.
No one in Ireland should be feeling like this. Ireland is a compassionate country, an engaged country. Ireland marches against water rates and debates with feeling on both sides of the abortion vote. Ireland cares. Doesn’t it?
So, you tell me, why are we still waiting?
Amanda Geard is donating her freelance fee for this piece to Arthritis Ireland as they continue to campaign for the appointment of new rheumatology consultants to bring Ireland in line with World Health Organisation standards. National Arthritis Week runs from April 9th-15th, with events across the country.