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The Worst Part of Living With Chronic, Debilitating Pain

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I know you think you know pain. You have felt the sting, burn, and dull ache of pain in your life. You have felt it, dealt with it, and moved on.

But I want you to know that not everyone gets that draw of the cards when it comes to pain.

Some of us, more than who are willing to say, walk around every day with pain. We taste it in our tears as we break down because the pain just doesn’t seem to stop, or in the sharpness that is somehow more painful than a knife could ever be.

We sleep with it closer than our blankets or pillow, even closer than the skin that is supposed to protect us from such suffering. It haunts us more diligently than an angered ghost, more tangible than whatever you are sitting on.

The pain becomes our dark shadow and somehow, even more loyal than a dear friend.

It isn’t something that is often talked about, but pain can alter a person’s emotions and even their psyche. Prolonged pain means that anger is easier to reach for. Everyone knows that behind anger, is hurt and suffering. And so we rage, sometimes easier than most. Anger takes a lot of work, so sometimes all that is left is sadness and exhaustion from that dark beast that won’t stop biting at our heels.

Pain sucks the life out of its host, possibly leaving a being just trying to survive with as little movement or effort as can be withstood. For a time, we all become shells of ourselves. Trying to keep the hollers of, “ouch” to a minimum because we are tired of hearing it from ourselves. It’s a desperate sob of frustrations and perhaps a touch of fear.

Eventually though, we get used to it.

Slowly we learn to not let it affect us so much. We work on a smile and carry on as best we can while we pretend to be “normal,” while on the inside we are tortured day by day. Personally, it took me 12 years to really get used to my particular poison. It’s constantly worsening, sharp, dull, burning, aching, stinging, numb — everything you can think of — I feel it daily and without any timeouts or break. My body has broken down with this pain. I’m exhausted to the point of blacking out every few hours to rest. It’s resulted in the inability to use even my hands. You don’t realize how much you use something until it is no longer there to catch you in a safety net.

But sometimes, sometimes pain isn’t the worst part. You can get used to always being harassed with worsening pain. You can get used to fighting constantly with your body to do what you need to to survive — but the thing that hurts the most?

The missing out.

The lost memories and the lost cherished friendships because people didn’t care enough to try and understand you had to stop texting because of the pain in your hands. Instead they think you just don’t want to talk to them.

And when you put in the effort? It means you can’t do anything else, that day or even that week. There are so many times I have desperately wished I could crawl out of my bed and stand on wobbly swollen legs, and limp into our living room just so I could bask in being around my family, hearing their laughs and familiar voices, their jokes and fun, but I can’t. All because of the pain. Because my body doesn’t work that way anymore. It feels like all my hopes and dreams for my future are dashed.

All that is left? Me begging for disability pay from a stingy government that spends years wearing you down until you just want to give up, rather than write another 12 pages about how you no longer can even make yourself a sandwich let alone take a decent shower without a shower chair and other help.

That is what pain can grow into. That is the monster so many of us have met and fight every day.

Many of us are alone in our homes and bedrooms, just wishing someone would offer to help, because even though we should have learned by now to rid ourselves of it, pride still closes our mouths and makes us ignore our lack of ability with even the most basic of things.

So, dear person with temporary pain, the next time you nick your finger while chopping up something for a meal or even stub an inconvenient toe, remember us. Remember those of us whose life is filled with constant pain. Remember those of us who look “normal” as you pass us in the grocery store, but know that if you touched us accidentally, we would start to cry when you kept walking the other way. Think of us, and savor each day as if it was your last. As if each step is a treasure and each waking moment is fewer than you wished. As if driving for fun is an honor, and a night out with friends and family is pure gold.

Because once upon a time, we used to be pain-free too.

Originally published: May 26, 2020
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