Chronic illness has its own language.
If you’ve recently been diagnosed with a chronic disease, you’ve probably already come across terms you don’t understand. It can be intimidating and difficult to break through the jargon.
We use jargon because it communicates the most common obstacles and triumphs of living with an invisible illness.
“Because we look healthy on the outside, one of the greatest challenges we have is explaining to others how a person who looks so good can actually feel sick or be in pain,” writes The Daily Migraine’s Lisa Jacobson. “They do not understand the freedoms many of us have lost.”
One term that helps explain the inexplicable: spoonie.
“A spoonie can refer to any individual who suffers from a chronic illness,” explains chronic migraine patient Sophie Cowley. “These illnesses are often invisible; to most people, spoonies may appear healthy and able-bodied, especially when they are young.”
“The daily feeling of being invisible can be one of the most challenging parts of being a spoonie.”
The term was coined by Christine Miserandino, an award-winning blogger and patient advocate, when she was trying to explain to a friend what it’s like to live with lupus.
“I thought she already knew the medical definition of Lupus,” Miserandino recalls at her website, But You Don’t Look Sick. “Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.”
“How do I answer a question I never was able to answer for myself?”
So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time.
When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.
Spoon Theory speaks so uniformly across the spectrum of illnesses that anyone with a long-term disease can relate. The explanation has become the medium of communication between “spoonies” – as many chronic illness sufferers choose to call ourseleves.
When my spoon supply is depleted, my body takes over, and I no longer have a choice of what I want to do. The pain cannot be solved by medication or cooled by massage. I am forced to sit, or more commonly, lay down. Once resting, it is only a matter of time before the exhaustion washes over me.
Sleep is the only respite.
Spoonies feel isolated by our biological emergency shutdown system because it is activated so frequently by mundane activities. A day behind a desk, mopping the floor, cooking a meal, watching children for a few hours, and any excursion out of the house are enough to turn on the alarms and activate the shutdown procedure.
It is difficult to defend against the guilt. Insurance companies make things worse by forcing us to constantly justify our treatments. We have to prove that we are really sick. It adds to the nagging concern all spoonies contend with, “Am I sick, or am I lazy?”
The language of pain and chronic illness has bridged the miles and given each spoonie power — to be kind to ourselves, to acknowledge our illness and to affirm that we deserve access to medical treatments that ease our suffering.
The term, spoonie, reminds us that we are not alone in our struggle. Our limitations are universal. Validation of our normalcy through the confirmation that we have a shared story finally quiets the nag in my mind.
Spoonie has taken on a life of its own, among patients with chronic illnesses. Facebook groups, online forums, and meet-ups have sprung up in response.
“Across the Internet, the spoon has been elevated into an identity,” writes Slate’s Amanda Hess. “Legions of people suffering from chronic illnesses call themselves “spoonies,” tagging the term on Instagram and Tumblr, and creating Web art and digital badges featuring spoons.”
About the Author: Danielle Yevsa is a patient advocate living with psoriatic arthritis.