There were many challenges to overcome in travelling to this mysterious country – a long and tedious flight, early mornings, arduous days of driving and walking tours, climbing the grand staircase of the Great Wall of China – and of course, attempting to communicate our needs with the locals. We were grateful for our English speaking guides who helped us navigate the historical chronicles of each place.
On our third day, we visited the lush and charming city of Suzhou, where my girlfriend and I were inadvertently abandoned at the Lingering Gardens; like the emperors buried in the mountains, we were entombed in a perimeter where strange tongues filled our ears. We were unable to communicate our situation – the best we achieved in our pathetic attempt was a glowing “hello” in broken English. We wandered the same two blocks, mired in an onslaught of strange and unfamiliar dialect, hoping our guides would find their way back to us. Three hours later we were rescued, relieved to be back among those that understood us.
Just like being lost in a foreign country, people can sometimes get lost in the language of our disease. One day my better half asked me what “Spoonie” meant. He saw this peculiar word on my Twitter feed. I was mystified – how could he not know about the word “Spoonie”? And then I realized – he didn’t know because he hasn’t learned the language of chronic illness.
When I was first diagnosed with RA, I was thrust into a world of new terminology – the language of chronic illness. This language is derived from the glossary of our own disease. We spend time in clinical environments, overwhelmed by such words as “inflammatory, asymptomatic, autoimmune, systemic, degenerative, acute and remission”. Those who live with arthritis are immersed in the tutelage of this new dialect. At first these words sound frightening, but we quickly adopt them as our new form of communication. Our guides are the medicinal practitioners and the support groups we connect with during our journey. In time, it becomes easy for us to spout off the names of prescriptions and medical procedures. Acronyms like NSAIDS and DMARDS are commonplace. We call ourselves “Spoonies” a unique term coined by Christine Miserandino, her way of explaining chronic illness to someone using spoons as a metaphor. I am one of many who have embraced this term, enjoying the quirky new definition of it in my life. We comprehend the idioms of our disease, and in doing so, change the way we communicate.
It didn’t occur to me that other people wouldn’t understand my new vocabulary – just as I was lost in China, my friends and family were lost in the jargon of my disease. Words like inflammatory, asymptomatic, remission and autoimmune roll off my tongue in ordinary conversation. I don’t stop to think about what others hear. Flares? Isn’t that a luminous pyrotechnic you keep in the car in case of an emergency? Autoimmune? This word doesn’t even show up in my computer’s built-in dictionary. Degenerative? Rheumatic? Systemic? Once upon a time, these words were like a foreign language to me – now I am proficient in their modest application.
My partner may not always understand my linguistically altered wordplay, but he does understand me. He implements his own vocabulary when describing my battle with RA. He calls me brave, courageous and plucky. These are words anyone battling a chronic illness certainly understands, but I there are still a few words in which I struggle to find meaning…for example, what exactly is a hashtag?