Sarah: Our culture is very pain averse I'd say, I mean nobody likes pain, nobody wants to go towards it, but we tend to have a way of thinking about pain as intrinsically wrong and bad and that we should never have it. Those of us that have had to live in pain for a while, often we get this reflected back to us quite overtly by doctors and by others around us: Why are you still in pain? How can you be in pain that long? Aren't you trying hard enough, haven't you tried this? Why aren't you doing that? Are you trying to just get attention? You must want to still be in pain.
We get all of this negative feedback towards us because our culture says pain isn't supposed to happen. So, if we're still in it something must be wrong with us, we must have done something wrong, we must have failed somewhere and that's really difficult to carry. Another reason why I've written about this is to say to people, you're not wrong, it's not a mistake, sometimes we meet pain - all of us are going to meet pain at some point on our path in life. Sometimes it doesn't leave that easily but that doesn't mean there's something wrong with us, it's some kind of journey that's trying to work itself out. I feel ultimately there is a positive purpose to it even though sometimes it's hard to see.
Jan: How do you get yourself into that mindset where you see that there might be a positive purpose or that at least you could turn it around and look at it a little bit differently?
Sarah: Well, that's in a sense, it's almost a discipline of will, you really do have to work on that, it's not easy. Particularly if you're having a really difficult day and you're in a lot of pain it's really hard to see that there might be something positive to it. So, it does take working through that in your own mind and one of the ways we work through that is we usually start out fighting against pain. When we meet it, the first thing we do is we want to end it and sometimes that works really well and it's over but sometimes it stays around, which is what we're talking about here. We can get in that battle mode with pain where we're fighting, fighting, fighting to end it and for a lot of us, it just becomes exhausting, this ongoing battle every day, every day.
So, you have to get to that point within yourself where you say, 'okay, that's not working for me, that's not ending it and I'm exhausted and I'm frustrated. Actually, it's making it worse because I'm tense, I'm contracted, I'm feeling that anger and that enmity against it.' So, for me, what I did was look at well, here it is, pain is already here, I can't get rid of it, I want to, but I can't, so how can I be with it differently? It's not something I want to be with but how can I make this be a different experience? So, for me, it was trying to see how I can look at pain differently, how I can be with it differently instead of this face-off with pain or pushing, pushing, pushing against it. Well, okay, what if it has a positive purpose? So, it's starting to ask different kinds of questions, like what if it's meant to show me something. I mean it is a signal from the body, it is, in a sense, an alarm signal, hello, I need some attention here!
So, the kind of attention I'm paying to it, is it the kind of attention that's really helping and healing or is it that angry kind of push? So, starting to ask different questions and beginning to think of pain more as something that is coming along with me rather than something I'm facing off against. What I find works for me is to try to continually shift those perceptions and it's an ongoing daily thing. When I meet pain and it is really spiked, I don't like it either, I have to remind myself, oh, yeah, this is where I need to stop, take a few breaths, start to work with it differently and relax around a little bit more even though that's challenging to do.
Jan: What lead you to start writing about pain?
Sarah: The pain wasn't going away. After a year, it became clear to me that I wasn't coming out of it. When we first meet things like this and we have a condition or an injury, an accident, an illness, whatever it is, we imagine it's just going to heal. You have the flu and you get better, you break your leg and it heals and so I thought for the first year that this was going away, but it didn't.
Finally, one of my doctors said, "Sarah, you're going to be looking at living with this for the rest of your life and it could even get worse." That sent me spiraling downward, emotionally, as you can imagine and anybody that gets that kind of prognosis has to face the intense emotional responses like, 'wow, what do I do with that? What do I do with that news?'
So, I started very slowly and painfully just writing down how I felt about living with pain, what it had done to me and how I felt it had invaded my life and taken over. A lot of the first writing was very much spewing out those deep feelings of loss and sadness and blame and shame and all of the things that come up when you live with pain for a while.
I was a single mom, so there was a lot about not being a good enough mother, not being present enough for my son, not being able to do the things I wanted to do with him. I wrote about living with pain and that evolved from me ranting about it into more philosophical thoughts like, ‘how could I be with this differently?'
Jan: I know you said that you wrote The Pain Companion because you wished that somebody else had written this kind of a book that would have helped you.
Sarah: Yes, absolutely. I felt very alone and isolated in my pain and I think a lot of people that are going through this do. It's hard for people that aren't in pain to understand what it's like. It’s really an intense experience. It’s like you're living with a roommate, well really a body mate, that you didn't ask for. Pain is so intrusive, it's so pervasive, it so dictates what you can and can't do. It's there in everything you do, it's there in all your relationships, it's there when you wake up, it's there when you go to sleep. I looked around and I couldn't find anybody at the time that was talking about that or writing about that.
When I went to my doctors - and some were wonderful people and very compassionate - but they didn't get it, they had no clue. They were very much focused on the physiological, what's going on with the body physiologically. But there's a whole other world of living with pain around that that has to do with your emotional self, your identity, how it affects the rest of your life which nobody told me about. I think this is true for a lot of people in chronic pain.