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The Everyday Setbacks We Need to Talk About With Chronic Illness


A recent root canal nearly killed me.

Granted, no one enjoys dental work. And root canals are fabled to be right up there with public speaking when it comes to Americans’ worst fears. But few people actually die from them.

So, when I say “it almost killed me,” it might be surprising that I do mean literally. Sort of. It just about dragged me into a depression and left me there. I hadn’t experienced that feeling before, even after four years with congestive heart failure, surgeries and procedures, rounds of bad news and poor prognoses.

None of that threatened to drown me. But an everyday toothache did.

Like the game of Jenga, where blocks are removed from a stable structure and then placed haphazardly on top, my life’s structure had taken some hits. My firm foundation was losing its footing. I didn’t have physical reserves in energy, stamina or pain tolerance.  My emotional reserves were depleted from holding it together on a daily basis, pretending to be “normal” with this chronic illness. I didn’t have social reserves in friends, family or neighbors that I hadn’t already tapped out for more “serious” times. And life continued at a brisk pace: more blocks were being stacked on top of my leaning tower. When that toothache block got pulled out, the tower swayed in a way I wasn’t sure I could steady.

Many living with chronic illness may already be operating in emergency mode most days just to survive. When one more (even what may seem small) burden is added, we crumble. It becomes the straw that breaks our back. And often, an unknowing world scratches its head in disbelief that something so “insignificant” could cause such an issue.

Malcolm Gladwell calls it the “tipping point,” the point at which a series of small changes or incidents becomes significant enough to cause a larger, more important change.

And that change is not always for the better.

I often visualize life as a sheet of notebook paper, with the margin clearly marked in red, as if a warning. Wide, narrow, or college rule, everyone’s life page has edges for white space, for breathing room, for survival. We write our stories the best we know how, and hope to keep those margins clear. But we all know scribbles and additional words, a doodle or an extra piece of important information, can fill those margins quickly.

Those with chronic illness often live edge to edge every day, with no margin for the unexpected. No resilience for the added difficulties. We have no favors left untapped, and we have not been able to make deposits for others to allow ourselves a healthy withdrawal from them. Above all, we have no capacity to keep the “I’m fine” charade going.

You can sit across from us or live right next to us and, at first, we won’t seem much different from you. But as you peel back the layers, you can see that chronic illness (or simply life itself) has taken its toll. We are weary and teetering. We are out of margins; our towers are about to collapse.

So, the next time you see a “normal” person “flipping out” over a long line at Wal-Mart or ranting on Facebook, remember that they might have just had one critical block removed from their foundation. They may be operating in the narrowing margin. They might very well be walking on the edge of their notebook, just trying to avoid another paper cut.

Because in their case and mine, even this small incident might prove to be more serious than it first appears.

Follow this journey on Divinely Detoured.

Getty image via Tinatin1.