One morning, I overheard two of my co-workers chatting over coffee at the hospice palliative care unit where we’d worked together for several years. They were talking about one of our colleagues who had been off work on an extended sick leave. One said to the other:
“Oh, I saw ____ the other day. She was out riding her BICYCLE!”
The way she said the word ‘bicycle’ stuck with me, tossed off with that pared down judgmental tone we use when what we really want to say is: “Hmph… Must be nice!” The tone somehow implied that anybody who can hop on a bike and toodle around the neighbourhood on a sunny day couldn’t be THAT sick after all. . . .
Fast forward from that morning to the months following my heart attack.
Almost immediately after being discharged from the Coronary Care Unit, all I wanted to do was to feel “normal” again, and going back to work seemed the most obvious sign of normalcy to me. But during my return-to-work trial, it was horrifying to discover that because of alarmingly persistent cardiac symptoms, I was simply no longer able to function in my public relations role. It was a living nightmare.
Four months after my heart attack, and after another hospitalization and more cardiac procedures, I had to leave work on an extended medical leave. Although I didn’t know it at the time, it was for good.
While I tried to get my brain wrapped around this demoralizing and humiliating turn of events, the memory of that overheard workplace chat and the dismissive way my co-workers had spoken about our friend on sick leave never left me.
Every time I had to walk into the village to buy groceries, I secretly hoped I wouldn’t run into somebody from work who might later tell one of our colleagues: “I saw Carolyn the other day. She was out WALKING in the VILLAGE!” – using that same judgmental tone that implies anybody who can stroll outside and toodle around the neighbourhood on a sunny day couldn’t be THAT sick after all.
This is what living with an invisible illness is like for so many of us.
Dr. Ann Becker-Schutte is a counseling psychologist in Kansas City who explained the problem with invisible illness like this:
“It means someone who is casually looking at you might not be able to see the level of pain you experience. And they probably don’t understand the effort that goes into a ‘normal’ day.
“They don’t see or understand because they have some degree of what I am calling ‘healthy privilege‘.”
For many chronic illness diagnoses (and almost all mental health ones), we often look pretty much like our old selves. We rarely sport a neck brace or a leg cast or some other visible reminder that something awful has happened to us. So others may believe that if we look the same, we must be the same. Right?
What they may not understand is how long it has likely taken us to look “the same”, how much effort and exhaustion this has meant, what we’ve gone through just to brush teeth or run a comb through stringy hair – and don’t get me started on taking a shower or maintaining this pasted-on little happy face in order to keep up a pleasant facade of normalcy. (See also: “You Look Great – and Other Things You Should Never Say to Heart Patients“)
The late cancer patient and blogger Lisa Bonchek Adams once wrote about this common phenomenon, reminding us:
“Just because people see me in public they shouldn’t assume that I’m back to normal or ‘feeling great.’
“It is hard to explain that it might have taken me all day to get the energy up to do that one errand or have that one coffee date with a friend, that I’ll need a nap and to rest for the rest of the day after doing it.”
What I similarly try to explain to friends and family is that relentlessly managing pain, exhaustion, shortness of breath or other debilitating symptoms requires a delicate daily balancing act of time management.
I’ve learned that I can have good days and bad, or good hours and then bad – interrupted by naps and snorts of nitro spray (the heart patient’s friend).
I’ve learned that very early mornings seem to be best for me. It’s when I can write, think, exercise, and experience several “normal” moments.
I’ve also learned to schedule what I call “one-outing” days or “two-outing” days, or (rarely!) “three-outing” days, each outing separated by enough time to rest and recover. When I forget to p-a-c-e myself like this, I find I pay a soul-sucking price I’m just no longer willing to keep paying anymore. It’s just too hard.
So next time you see somebody who’s been ill out walking or biking or merely waiting in line at the grocery store, please resist the urge to reflexively express surprise (to that person or, worse, behind their back) that they’re up and about and acting so “normal”.
In fact, the most helpful thing you could do is to just try saying something like:
“Good to see you today!”
Q: Have you ever heard something like that “Must be nice . . . ” tone?
Part of this essay was also included in my book, A Woman’s Guide to Living with Heart Disease. (Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).