A buzzword originally coined by blogger Christine Miserandino, a spoonie is someone who suffers from an “invisible” chronic illness. Christine, who has lupus, used a handful of spoons, while eating at a diner with her best friend, to illustrate how her daily life is different. A spoonie begins her day with a certain number of spoons, and needs to plan where and when to use them. When the spoons are used up, the day is over. The spoons represent currency such as energy, focus, mental or visual acuity, physical strength or whatever is in short supply for someone living with chronic illness. For spoonies, getting out of bed and putting something in our stomachs so we can swallow or inject our medicine costs spoons. Showering and choosing clothing costs spoons. Before we even leave our homes, we’ve spent a portion of our daily allotment. For the rest of the day, it’s up to us how we spend the remaining spoons.
With an “invisible illness” we appear to be well, so those around us may not understand our limitations and may mistake reticence for social awkwardness or a wishy-washy attitude. The truth is that someone who looks well, and can “pass” as able-bodied, would rather blend in with the rest of the world. We can’t share a running commentary of what is numb, tingly, sore, weak or foggy, or we’d be tiresome to be around. Nobody wants to stand out because of illness. We keep it to ourselves unless our spoons are being spent too quickly, or frivolously. We want to look our best and fit in where we can. With the general public, we will sometimes have to endure dirty looks as we emerge, unaided, from our disabled parking spaces -- it’s not worth explaining to a stranger that in the heat of summer walking across a parking lot feels like trudging through ankle-deep mud. But for loved ones who want to better understand, spoons are an apt tool.
Each spoonie is a little different. Even with one type of illness, our limitations vary. I learned long ago that eliminating stress saves many spoons. I only make right turns in traffic because I’d blow through a lot of spoons waiting to turn left at a busy intersection. I need to avoid heat at all costs. Getting too warm will eliminate all my spoons for the day at once. Brain work, like paying bills, writing or organizing, needs to be done in the morning for me. The brain spoons are the first ones to go. Accordingly, prep for dinner needs to be done around lunchtime. Planning spoons are unavailable at the end of the day. Occasionally, if I’ve spent all my spoons and still have to make dinner, a little vodka on ice will provide a temporary boost, but then I’m spending tomorrow’s spoons.
While a spoonie has a general idea about how many spoons are available each day, chronic illness is unpredictable by nature, so our allotment of spoons may change at a moment’s notice. Even with stable health, our days don’t always go as planned, and spoons sometimes need to be used out of turn.
Chronic illness is isolating. When we feel misunderstood we are even more alone. The spoonie discussion has helped to connect many of us who are in similar circumstances. The tangible illustration of spoons as currency is an easy way to conceptualize what may otherwise be difficult to grasp from an able-bodied frame of reference. While I feel fortunate to “pass” as able-bodied sometimes, I’m also a spoonie.