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The Problem With the Pain Scale When You Live With Chronic Pain

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“Rate your pain.”

Such a simple request, isn’t it? I never quite know how to answer it, though. I work in healthcare so I am very familiar with the pain scale, the numbers, the faces, but until I became a patient with chronic pain I never understood how complicated that scale actually is.

Pain is such an individual experience. It’s very hard to communicate this experience to other people. For example, you can take two people coming into the emergency room with the exact same injury: a broken arm. These two people will give you a very different description and rating of their pain, even though they have the exact same fracture in the exact same bone. It’s all about how your brain perceives your pain and also your past history and exposure to pain.

Those of us with chronic pain wake up every day with some type of pain. This automatically causes a problem with the standard pain scale that starts at zero. Some of us never have a zero. Most of us live our daily lives at the standard pain scale level of 2 or 3, and sometimes at 4 or 5. People who don’t have chronic pain often have a hard time understanding that. We are able to function at these pain levels because we don’t have a choice. So, if I go into the emergency room with pain and they ask me to rate my pain with the standard 0-10 scale, I’m likely going to rate it an 8 or 9 because I only go to the ER when I absolutely cannot get any relief with anything else i have tried.

However, this makes the hospital staff question if I am telling the truth. What they have been taught and shown is that a patient at an 8 or 9 is going to be inconsolable, writhing in the bed, screaming out in pain. They look at me and see me lying in the bed with few tears. I may even be on my phone looking at Facebook or Pinterest. I will be changing position in the bed frequently, trying to get comfortable, but I will be quiet and probably appear a little withdrawn. This goes against everything they have learned in their training and years of experience. In their eyes, my pain can’t be a 9; I look like I’m fine, maybe a little uncomfortable.

This is where the communication problem arises. A chronic pain patient’s pain scale is very different from the standardized pain scale. If you want me to rate pain on a scale of 0-10, you have to realize my chronic pain scale 0 is the standardized scale’s 2. On the chronic pain scale, I’m usually at a 6 or 7 when I decide I have to go to ER, which converts to the standard scale’s 8 or 9. You also have to realize I have become very good at hiding signs of pain. I try not to talk about it because I know my friends and family get tired of hearing it. I try not to grimace when the pain hits me because I don’t want to answer questions and discuss my newest pain. I use distraction a lot to help me get through the harder times. I don’t like to draw attention to myself; I don’t want people to feel sorry for me or treat me differently because of my illness. I just want to be seen as “normal,” even though I feel anything but normal.

So, you can’t assume I am not in pain by judging me on how much pain I appear to be in. We become masters of appearing normal, of faking being well, so when I reach out for help and admit I’m in pain, please realize this simple act says more than any number on a scale could ever say.

Photo by Joe Gardner on Unsplash

Originally published: April 20, 2019
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