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.