I remember the precise moment my diagnosis became real: Wednesday, 12th September 2018, sometime in the afternoon, in a medium-sized room, with its desks and chairs resembling a business meeting setup, or a literary seminar at a British university. But instead of roundtable Shakespeare discussions, I was in the Pain Management Centre of the Royal Prince Alfred Hospital, and the speaker was the other kind of doctor – the ‘real’ kind, some would argue – and he was telling the room of patients, myself included, that the pain I’d been experiencing since 2003 would never end.
I sat there, dutifully taking notes in our handouts, my neck and shoulders and back and arms and legs and head and ankles and everything in between hurting, always hurting, my brain slow to process the words. My pain would never end? Never, as in, not ever? Not even a little bit, not even for a while, not even…ever?
What did that word ‘never’ even mean? My mind flashed back to Shakespeare, to King Lear’s famous line, the heaviest trochaic pentameter in English literature, the infamous epizeuxis: ‘Never, never, never, never, never.’
Never.
I thought back to the preceding years of my life, when my pain, though persistent, had been less intense:
2007: my second year of university, enthusiastically juggling my combined degree, and running two societies (AnimeUNSW and the Music Society), and performing as a cast member in Med Revue, and volunteering as Front of House for Law Revue and CSE Revue, and working a part-time job, and writing fanfiction, and connecting with my online friends, and hanging out with my friends and boyfriend ‘in real life’. Such an array of activities was not conducive to ample sleep, so I had always been tired, and sore, and sometimes dizzy and nauseated – but surely, that was situational, and not biological?
2011: my Master’s year at Durham University, diving headfirst once more into both academic and extracurricular pursuits: my classes, of course, and then singing many services with the St. Chad’s College choir, and learning how to ballroom dance and competing in amateur competitions across England, and travelling both in England and Europe, and binging on episodes of Bones with my favourite housemate, and writing fanfiction and essays alike, and teaching my English students back in Sydney over Skype in the early morning. But the pain had intensified, and I vividly recall the burning in my shins as I walked the hilly streets of Durham, but dismissing it as situational. Who didn’t get sore when climbing hills? Surely, everyone is in pain, first sharp and then dull and lingering, when they walk up and down steep streets.
2017: back in Sydney, PhD in hand, starting my small English tutoring business, working long days and weeks and months. But this pain, this fatigue – surely, surely, everyone else feels it too? The dull throb all over your body, the headache that has not ceased since 2003, the exhaustion that’s become your constant companion, the increased aches when you sleep too much, or not enough, or eat what you shouldn’t, or even what you should, or exercise regularly, or stop to rest – isn’t this what you feel, too? Isn’t this nonstop pain pain pain normal for everyone?
I recently came across a meme with a quote I shall paraphrase: ‘The normal amount of pain is zero.’
Back in 2018, in that faux corporate room at the RPAH, I began to realise that my pain was not normal, my mind and body were not normal, my life thereafter would not be normal. Because I have an illness, an incorrigible, debilitating illness called ‘fibromyalgia’, where I was only diagnosed through exclusion (meaning all my scans and tests came back fine, yet the pain persisted), and which has no cure or proper medication.
An illness where my pain would never end.
