Sometimes people who aren’t in pain imagine that those of us who are must have done something wrong. The exact wrong thing we did is a bit unclear, but it must certainly exist, and it is something they would never do. As if there’s a sign in the road – no Pain, go left. Pain, go right.

There isn’t a sign. It’s more like the floor dropped out from under me, and there I was, drowning in a sea of pain, with no land in sight. I looked around my tiny house and it seemed that my whole life had shrunk to that lilliputian size. I had given up almost everything because my condition demanded it. I had contracted my life, shrunk down within it, and withdrawn out of necessity since almost every activity other than walking made it worse. I sat in my house and felt the fear of disappearing forever inside my own house of pain. “I can’t let this happen,” I thought, “I cannot become this pain.” And yet, it seemed that in many ways I already had. Pain dictated everything about my life. I was losing myself.

Pain had become the air I breathed, the ground I walked on. Pain was both the prison and the guard. If you have been in pain for any length of time, you know what I mean. Changing your attitude might make the cell a little more comfortable, but it doesn’t necessarily provide the key to the cell door. There is a secret exit code that nobody seems to know, but which cannot be bypassed. Some people have said to me, “Oh, how great to have all that free time!” Um. No. If you have a body that works well and isn’t in pain, more time to do nothing would doubtless be a blessing. But all that “free time” in which to sit or lie or walk slowly in intense pain…not so much.

Those of us in persistent pain sometimes keep ourselves small and silent so we won’t infect the world, thinking that if we speak it can only be with the voice of pain, and therefore it will only create more. As if we can’t re-enter the world until we are pain-free.

But we must find ways to re-include ourselves in the world somehow. Maybe only in small ways at first, and according to our physical limitations, but it is something I feel we must do. We are part of the collective, a community within a community, and it is important to give voice to our experiences. This is why I write.

Because it is important not to let the invisibility of our pain become the invisibility of ourselves.

Getty Image by ojoel