When Chronic Pain Makes Me Think of a Ghost

It’s often hard to describe to people what it’s like to spend your life in pain. Chronic pain is difficult because people who haven’t experienced it can only imagine it in the abstract. They can’t ever conjure an actual image of what that experience is like; how you can be in pain every moment of every day and no one else would ever know unless you told them about it, because this is just what your life is.

But even if that’s what your life is, there are always some days that are worse than others. There are always some days that just drag you down and leave you at wit’s end not knowing what to do with yourself. That’s the only way I can describe the feeling anyway. When you’re in so much pain that you feel like you’re going to vomit and you start gasping, and just reaching for anything that could help you get away from the pain. It looks and feels like desperate confusion. Neither you nor your body really know what’s going on, you just know that you really, really, need it to stop because it’s too much for such a small body to handle.

But you make it through.

That has always been the thing that gives me the most strength on my hardest days. Every time I have a moment where I am just
absolutely desperate because I am in so much pain and the world is just continuing on around me, I remind myself that I have been there before. And I’ve made it through.

And I finally got to sleep. The solace of sleep after a day like that…it’s another source of anxiety as much as it’s relief, because I know that as soon as I wake up, I’ll have that other feeling that’s almost harder to describe — I think of it as a ghost. Waking up the day after a flare
that brings you to your limit is like waking up after being haunted.

You’re not alone — the pain isn’t actually gone. The pain will never actually be gone. But it’s dimmer. You don’t feel “good” because you know that it’s still there, it’s just not screaming at you. You wake up feeling like you’ve been changed, like you’ll never quite be the same person that you were before that experience (before you had to sit in class or at work or with friends while all you wanted to do was get away).

No matter how many times it happens. Every morning that you wake up following a day like that, you’re a little bit different, because now you have another ghost who travels with you. Another ghost who will tell you, “Oh maybe that’s what made me flare last time,” or, “maybe you should sit down now,” or, “maybe that’s enough.” Another ghost of your own self.

But every. Single. Time.

You and your ghosts make it through.