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When Chronic Pain is Both Prison and Guard

8/23/2018

6 Comments

 
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This post appeared on The Mighty website, July 18, 2018
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 I had contracted my life, shrunk down within it, and withdrawn out of necessity since almost every activity other than walking made it worse.

Living in the House of Pain

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.

We are Not Invisible

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.

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Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007.

She 
is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library  2018).
6 Comments
Kris
8/24/2018 02:14:03 pm

I have to tell myself that it's ok to be in pain in public from time to time so I can get out of the house. I struggle with this. It doesn't feel or look pretty. I look like an angry old woman, complete with a cane, and I can't help it. This is me sometimes, world. If it gets worse than this, it's time for me to go home though. It's the tears in public I most dread. It's a balancing act, isn't it? I'm usually glad I went out when it's all said and done and my pain comes back to baseline though. Thank you, Sarah

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Sarah link
8/24/2018 02:24:08 pm

You're so welcome, Kris. I totally understand. It is definitely a balancing out - when to go out so you're not totally isolated and alone and when to stay home because it's going to be too much. It's those choices we have to make from moment to moment. Thanks connecting. xo Sarah

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Marty Brastow
8/24/2018 06:48:37 pm

I go out when I have less pain, of course, knowing that I will suffer for it later. But it’s important to show up at my regular grocery store nd to have them ask me how I’m doing, so I feel connected again.
I also try, while I’m out, to make someone else’s day better. Let them go ahead of me in line if they have fewer items than I do. Tell someone I love their shirt or blouse. I don’t always notice because of my pain, but I try to make the world a little nicer place when I do go out.

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Sarah link
8/24/2018 07:11:32 pm

Wonderful, Marty, it's so important to make those connections! Thank you so much for your comment. Sarah

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karen lawrence
8/28/2018 04:18:45 pm

Sarah, am catching up with meaningful emails!!
When I am housebound due to pain I am so grateful to have such a caring support network...
Since last summer my whole world shrunk to not only my home but my bedroom.
This is my oasis of calm, peace and gratitude.
My neighbours visit and support me.
My husband is always there for me despite the challenges we both have to overcome.
He also suffers from pain and has found it difficult to deal with.
You have made a meaningful difference to yet another painful night.
Sending best wishes and gratitude, Karen

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Sarah link
8/28/2018 05:19:30 pm

I'm so glad to have been of some help to you, Karen. I'm also happy to hear that you have such an incredible group of supporters around you - it is so important. Thank you so much for connecting, and I wish you peaceful days and restful nights, as much as possible. xo Sarah

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