The Part of Chronic Pain That Can't Be Shared

Few things are as intensely personal as pain. I can sit and tell you how it feels like there is an ice pick behind my ear and coming through my eye, or that I feel like a million spiders have laid eggs inside my skull and are now hatching and crawling through my blood vessels. I can tell you it feels like a steady timpani beat between my ears, or I have a vision of a giant monster trying to wring every last drop of moisture out of a rag, except the monster is migraine, the rag is my brain and the moisture is the ability to string two sentences together. I can tell you all these things, but there is a chasm between me telling and you understanding.

Most experiences in our lives can be shared. The grief of losing a loved one, the joy of wedding celebrations, the hilarity of an inside joke — all are amplified by community and relationship. Pain isn’t like that. It’s experienced in a silo, where no amount of explaining can lead another to the same experience. With an invisible illness, the only insight someone has into my pain is what I choose to tell them. This places a burden of responsibility on my shoulders to figure out when and how much to tell, and to who. It also invites doubt about whether I’m sick at all. I’ve had more than a few people, from strangers to doctors, express disbelief when I tell them about my symptoms. I’ve mulled the questions “Am I really sick? Is this normal and I’m just a wimp? Is this psychosomatic?” over in my head for hours at a time.

And here’s the kicker — there’s no real way for me to get an answer to those questions. No matter how advanced our technology has become, no one else can experience my pain for me. No one can step into my body and say, “This is normal, why are you complaining?” or “Holy cow, how do you do this every day?” I’ve often wished for that ability, for someone to validate my experience; not because I want someone else to feel pain, but because I want to make sure I’m not “crazy.”

I often hear people discuss how chronic illness can be socially isolating, but I think it’s important to acknowledge the loneliness that comes from carrying a weight that cannot be shared — no matter the number of conversations or strength of a support system you have.

So I can sit here and give you metaphor after simile after illustration about the sensations running through my body (it’s actually one of my go-to ways to pass the time in the dark while waiting on meds to kick in. I find it a darkly comic endeavor — my poor husband doesn’t enjoy hearing the results of this exercise), but word pictures only go so far. Metaphors and similes and illustrations never quite capture the real thing.

What is both comforting and sobering, though, is realizing that this personal experience is also universal. While I can’t directly share my pain with another person, I can’t experience anyone else’s either. Whether a lifetime disease diagnosis or a broken leg, I don’t get to decide if someone is exaggerating or minimizing their symptoms or pain levels. Their own pain silo is as unreachable to me as mine is to them. It’s true some people may fake illness for a variety of reasons — but I lean, always, towards believing people when they say they are in pain or unwell. I know full well just because you can’t see it doesn’t mean it’s not real. Maybe that’s the reminder we all need: since some things in life, like pain, are inherently unsharable, let’s share the things that we can — like compassion, kindness, and trust.