Living with Chronic Pain

Chronic pain is one of those diseases that are invisible—no one knows you have it unless you tell them. You’re not missing a limb, you don’t have visible physical symptoms, the only way anyone knows the difference between you and a normal person is if you tell them. Telling people is hard. I’ve never liked talking about my chronic pain with people, because most of the time it feels like there’s nothing to say.

“Why, yes, I have been in excruciating pain throughout our entire conversation. Now let’s have an awkward silence where you try and figure out something sympathetic to say, and then you say it, and then I try and change the subject to save us both the awkwardness of acknowledging the pain-filled reality of my situation and our mutual inability to do anything about it. Pass the dip.”

My particular variety of chronic pain is most likely what’s called myofascial pain syndrome. The short version is that it’s an accumulation of persistent muscle knots of sufficient number and severity to produce pain. Practically, what this means day-to-day for me is that I’m always in pain, always planning out my next move with respect to how it will affect my level of pain, and the things I can do in a day are very limited.

Exercising too much makes the pain worse. Moving around too little makes the pain worse. Stress makes the pain worse. Lack of sleep makes the pain worse. Sitting, standing, lying down, or just in general being in the same position for a long period makes the pain worse. As you can imagine, many of these contributing factors play into each other. Being stressed causes pain causes stress causes pain causes lack of sleep causes stress causes pain, ad infinitum.

Think of something you do for fun and I can almost guarantee you there’s a significant risk it will aggravate pain in some way. Take a sampling of the things I enjoy: exercise (carries a risk of overdoing it), playing music (involves sitting or standing for extended periods), programming (sitting for extended periods), watching tv (sitting for extended periods),  and sex (almost always a high risk activity pain-wise).

Here’s the list of things that never carry any risk of increasing pain:

There, done.

Welcome to the world of the chronic pain sufferer. Count your spoons, think ahead, be in pain.

I’m not trying to be dramatic or anything here. I’ve spent most of the last seven years of dealing with this not wanting to talk about how bad it gets, or even how bad it is on average. Hell, even how bad it is on the best days. Lately I’ve realized that being completely open about just how bad it is can be cathartic, though, and so I’m trying to fight the instinct to sugarcoat the difficulties. Because whether I feel whiny or not, this is how it is. It’s important for me to acknowledge that, both for myself, and for others.

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