Title pretty much says it all. If you haven’t experienced it, count yourself lucky. Once the pain lasts longer than a few years, the old you no longer exists. You lose your self confidence. You start to care and get angry over things that never mattered before. It becomes hard to make long-term decisions. So many of the choices you make day to day are based around limiting pain, or planning around your limitations. It becomes hard to separate yourself from your illness.
Seeing someone playing the piano doesn’t inspire you to practice anymore, it just depresses you when you realize you can’t. It infuriates you when you start to think about all the other things you can’t do. This fury slowly withers into worry, and this worry keeps you up at night. And then you lie there defeated and at a loss because you know not getting 8 hours of sleep means worse pain tomorrow, possibly another day completely lost, passing by without you being able to really experience it. You get by, but not much else.
It’s not the pain. We’re not weaklings. Well, not in that way. Many of us could probably endure physical torture by a hostile government at this point. The pain is always there, and can be dealt with by mental toughness. But, the real weakness, we can’t get away from that. The inability to stand, or open a fucking door with your hand. No amount of positive thinking, or mental toughness, changes that. And that’s the part of the condition that eats away at you and destroys your soul. And no, that’s not every day for most of us. Some days you can almost feel normal again. But the pain becomes a sort of harbinger of this weakness. And you live in fear knowing that at any moment the weakness could overtake you and then you’ve lost another day, month, or year. You can no longer grow, become more yourself or improve yourself. Chronic pain is the wall that you can’t overcome, but you have to, before you can move onto anything else.
Then there’s the isolation. Normal people will often misinterpret our complaints about our pain, or our general dodginess and unreliability as just typical negative personality traits. But we can’t help it. We want to be able to trust our bodies and abilities again too.
We (or at least I) start to despise normal people for being lazy, unhappy, or idle. All the excuses that they make, while we sit here, trapped in our body-prisons, and look out on a world where people could be and do so much more. And one where we don’t even get the chance to try.