Those who do not live with chronic pain will never understand what it’s like to make room for pain, to adjust your life to accommodate it, to get used to it. Just because we may seem better, or seems as though things hurt less (even to ourselves) doesn’t mean that they do.
We learn to adjust our baseline pain level as we learn to live with more and more pain. This is why we can be in a great amount of pain every day and it doesn’t show on our face; because that level of pain has become our new baseline, our new normal.
This week’s inspiration comes from Brainless Blogger, Nikki Albert, who managed to say something I’ve been trying to put into words way better than I ever could…
“I think something I have come to terms with when it comes to chronic pain is this realization that the pain will not go away. That is this actual physical sensation of pain will not go away. It can be lessened to some extent with various different medications. It can be managed with various different methods. But it will be there….
So there will be pain.
But you make room for it. Because you must. And we all know this because we all know that we develop a certain baseline tolerance to pain….” – from The #pain doesn’t go away, you just make room for it.
Doctors (and others) look at us and judge our level of pain on what they see, on the reactions that we give them, the cringes, the furrowed brow, the gritted teeth, the grabbing at the painful area.
When we don’t give these non-verbal signals it’s hard for them to comprehend that we are really in the pain we describe. They think we are exaggerating the pain; that we can’t possibly be in that much pain and not be showing it through the nonverbal queues that they were taught to look for.
Doctors judge our pain from a look on our face, a cringe, or other response, which often isn't there. This is why they have a difficulty understanding how much pain we are really in. #chronicpain Share on XWhen those cringes aren’t there they think we are lying. The truth is they have no way to accurately measure our pain, and pain is completely subjective. We can base it only on our own experience.
What is a 10 to one person, might be a three to another.
I’ve been reading a new book called The Story of Pain, by Joanna Bourke, it’s basically a running history of pain and of how people understand and communicate pain, how doctors diagnose it, etc. It’s rather interesting, but it’s a pretty heavy read on many levels. It’s like reading a very long research paper, but there are so many great citations that I want to dig into further.
She has shared so much great information that I never knew, or never thought about regarding what plays into our pain understanding. One thing I found interesting is that in many cases doctors believe that patients who provide the most in depth descriptions of their pain are lying.
One story I read was of a woman suffering horrifying pain and when asked to rate her pain on a scale of 1 to 10 she said she imagined a 10 would be burning alive. She asked herself what percentage of that pain she might be suffering and decided on 30%, so she reported she was at a 3. Of course, the doctors dismissed her. Later, her brother (a doctor) explained that a three is nothing. Yet, for many of us the pain that was a 10 months ago is now a three, because we’ve gotten used to that pain, we’ve learned to make room for it, we’ve learned to live with it.
The idea that doctors don’t believe in chronic or intense pain goes back so much further than we realize. And, we don’t stop and think about how much society plays a role in how we communicate pain, or whether we communicate pain.
How we are taught to just grin and bear it and put others first (usually through religion), and just why it is that we feel guilty about being in pain and look at ourselves for things we may have done to “deserve” the pain. As deep as the book is, it’s hard to put down. If you enjoy a deep read I highly recommend it.
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Mike says
Wow! I could not have more eloquently illustrated what I think we all collectively know. I live with psoriatic/rheumatoid arthritis and ankylosing spondylitis, and I constantly struggle to explain pain, as even for me, from my own perspective, pain has become subjective. When you mentioned “making room for pain,” I chuckled to myself as I often refer to my pain as a passenger, or more accurately a stow-away, yet still room must be made to accommodate all souls on the ship right??? 🙂
Thank you for explaining this in a way I can share with others so they MIGHT begin to understand what we all live with.
Best regards,
Mike
Astrid says
This is beautiful. Paradoxically, it reminds me of today’s sermon at church, where the pastor said suffering won’t always be there. While technically as you say it will with chronic pain, we can manage it with such techniques as mindfulness, whereby we make room for it.
Julie says
Truth. I’m sure he was referring to something else when he said it won’t always be there – the Christian belief that when you get to heaven there is no suffering. The book I mentioned in the last bit of my post discusses the religious impact on pain quite a bit. It’s rather interesting how for many years the church taught that you should give no emotional support to people suffering because they were suffering for their sins, and basically once they worked through it (asked forgiveness properly, etc) the pain would go away. But, if you tried to make them feel better or talked to them about how much they’d done or what a good person they were, that would delay their forgiveness. It made me think about how much things really stick, and perhaps that much of the stigma attached to the ill is just leftover from those times.