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Sometimes I think back to a few years ago when pain didn’t make a regular appearance in my everyday life and I get upset. I wish I could go back and tell my younger self to appreciate that time more, to enjoy the freedom of not being in pain.

I find myself thinking similar thoughts about people who don’t live with pain or chronic illness: enjoy it, be grateful for every single moment. You are so lucky.

This may sound stupid but I see people laugh and smile and eat and drink all without pain and I feel angry and jealous and frustrated.

Two of me while hiking in north Georgia

I know there’s a psychological part of my pain. It’s not just my anatomy, but it’s now a well worn neural pathway that can be triggered by my thoughts and feelings. Some stress? Here, have throbbing pain in your left jaw joint and make it extra excruciating whenever you try to eat, or sing, or talk. A touch of anxiety? Here, have pain and tightness down the left side of your neck and a knot deep under your left shoulder blade.

Part of it is psychosomatic, and I’m working on trying to treat it with CBT. But I don’t exist in a bubble. I have emotions and I can’t spend all of my time and energy trying to REMAIN CALM. FEEL NOTHING. DON’T REACT. That’s not living.

I hate that even when I try my hardest to enjoy the moment, I’m in pain and I can’t ignore it. Like biologically and evolutionarily I can’t NOT acknowledge that I’m in pain.

Even if my mood isn’t affected, I still have to think about my pain every single day. Imagine.

I know that none of these thoughts are fair or helpful. But this is what goes through my mind.

I see the awful shit other people go through, like people with terminal illness, or people who have suffered accidents and become disabled… Jodi from Legal Nomads who has a spinal fluid leak and can’t sit up or walk, or Mari from Instagram who was hospitalized for Guillain-Barré Syndrome and paralysis, or Lady Gaga who I think has worse pain than I do…I’m so in awe of them all in how they keep going. They amaze me.

I know I’m supposed to take advantage of the good moments and enjoy them, and let myself rest during the not so good moments. I just miss the times when there was no delineation.

The other night I asked my friend Eliza, who suffers from multiple chronic illnesses, how she does it. She told me there will be pain but even in every painful moment there will also be joy. And that I’ll look back at the same moment when I was in pain and will also or maybe even preferentially remember the joy.

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