Rosalind Joffe
Pain – what a confusing thing. If you live with it, you know what I mean.
A friend with osteoarthritis confided that she’d never been in pain like this before. But what hurts her most is that no one understands what this is doing to her.
A client living with very-hard-to-treat lupus told me that her doctor told her to stop thinking of herself as someone who lives in pain and that she’ll get better when she thinks of herself as a healthy person. I’d call that magical thinking. What do you call it when it’s coming from your MD?
It’s not just what other people say or don’t say. I struggle with how I talk to myself about it. Language is woefully inadequate.
I became aware of this relativistic world more than 30 years ago. Getting out of bed, I felt a sharp pain in my ankle, like I’d broken it. There was no swelling or discoloration but given how it felt, I was sure it was a fracture. But the x-ray told a different story. I was oddly disappointed and even embarrassed to hear that my ankle looked perfectly fine. Then the physician said it could be a hairline fracture and I could use a brace. I was relieved. I couldn’t bear that this capable person would think I was some hysteric or hypochondriac. This fear would accompany each new pain from some unknown source.
But the ankle brace didn’t help and the pain stayed the same for two months. Then it went as quickly as it had appeared and returned a few days later. That’s when the lightbulb went on. I was living with multiple sclerosis and my nervous system doesn’t give ‘accurate’ information. Now it made sense that my ankle looked fine but felt broken. My pain didn’t come from an injury and it was still real. How confusing is that?
Through many years of random pain events, I’ve become more used to this experience. I can tell myself it’s just my brain mis-firing and it makes sense that the degree to which I feel pain doesn’t match what’s happening. That doesn’t stop the irritating and sometimes significantly debilitating experience but it stops me from being disappointed that there isn’t a more visible reason. I’ve also learned that living with pain creates other problems beyond what’s going on in my body.
First, pain is a unique experience. There’s objective evidence with a torn ligament, broken rib or a heart attack. But pain is invisible and it’s up to us to report on it, subjective as that is. That’s particularly difficult when our cultural ethos is to ‘be strong’, to ‘move on’, to be that athlete who falling on his ankle, winces and rises to keep playing. It’s easy to feel pride when you’re told, “You have a high tolerance for pain”. And to feel shame if that’s not what you hear.
Then there’s the fear. Pain can be frightening. Will I make it worse by doing certain things? How bad could this get? A client told me that on the bad days, it feels like a monster inhabits her body. Some days it’s all you can focus on. Other times, you don’t notice it at all.
This would be much easier if there were a neat set of simple directions for Living with Pain. I have my own complicated relationship to my pain. I like to think that I’ve figured out how to live with it, but there’s a bit of fear even as I write this. I take comfort in knowing that I’ve managed thus far through trial and error, mixed in with a little hope, a lot of resilience, and the recognition that I’m alone with my pain and it’s up to me.
Pain is my fellow traveler and long-time companion. I don’t have to like it but we do have to live together. No one has to tell me it’s all in my head because I know it is. I’m ok with that.