I Have No Pain Scale and Everything Hurts: Communicating Chronic Pain

Hello people of the internet! It’s been a while. I have had a lot of personal stuff happening over the last six months or so, as well as some (very exciting) professional things which I’m not ready to announce yet.

One more order of business before I move on with the post: I’m trying to learn how to use alt-text and image descriptions so that they’ll work in the most accessible way possible. If I’ve screwed something up you would be doing me a massive favor by letting me know.

I’ve recently started using tumblr again. The plan was to stay very low profile and only post about fandom and cute animals and sometimes personal stuff. This plan has been something of a failure so far, partly because much of the advocacy and activism in which I’m involved is personal, and partly because I’m just not that all that great at keeping a low profile (and I have a pretty low threshold for what I consider “low profile”).

Anyway, today I came across a pain chart that someone had posted. Here it is:

A pain chart which includes descriptions of experiences. Text says: 0, no pain, "I have no pain", followed by 1, minimal "my pain is hardly noticeable", 2, mild, "I have a low level of pain. I am aware of my pain only when I pay attention to it," 3, uncomfortable, "my pain bothers me but I can ignore it most of the time," 4, moderate, "I am constantly aware of my pain but I can continue most activities,", 5, distracting, "I think about my pain most of the time. I cannot do some of the activities I need to do each day because of my pain,", 6, distressing, "I think about my pain all of the time. I give up many activities because of my pain,", 7, unmanageable, "I am in pain all the time. It keeps me from doing most activities,", 8, intense, "my pain is so severe that it is hard to think of anything else. Talking and listening are difficult,", 9, severe, "My pain is all I can think about. I can barely talk or move because of the pain," and 10, unable to move, "I am in bed and can't move due to my pain. I need someone to take me to the emergency room to get help for my pain.
The lovely colorful version of this pain scale was created by tumblr user doodleloser, who seems to be a spoonie themselves.

Now, I really like this chart. I will probably print out a copy and bring it with me to doctors appointments. All that being said: There are still some pretty big flaws in this chart re: chronic pain.

(Obligatory disclaimer because this is the internet: chronic pain is not the same for everyone and my experiences and those of someone else with chronic pain won’t necessarily match up. There are obviously some people with chronic pain who found this chart extremely helpful (and so did I, I just think there are other factors that are necessary for it to be useful.)

When you have been in pain for a long time with no treatment, you often find ways to order your life around that. Which means, for example, that even if your pain stops you from leaving the house, you won’t necessarily rate that pain as interfering in your activities, because you’re used to not leaving the house. It’s part of your routine.

That doesn’t mean you don’t still have pain you’d rate as “interfering with your activities”. Even though I’ve pretty much worked my life around my pain, a migraine (a bad migraine) will totally take me out, to the point where I can’t read or even sit up and do pretty much anything other than writhe on the floor in utter misery. My migraines are probably a 9 or 10, but it’s hard to compare them to anything else I’d rank 10 because the brain doesn’t like to remember what pain feels like necessarily. It also isn’t something I need to go to the emergency room for because they can’t (or won’t) do anything about it. I know because when I was younger, that’s what my parents did when the migraine pain got really bad, and it never actually helped particularly. They also don’t stop me moving, but they do sometimes cause me to lose control of my movements.

My everyday pain, however, is harder. When I left college it was largely due to my pain, and that’s a pretty big change to one’s activities, so you’d think it would be a 6 or a 7, but I probably would have rated it a 1 or 2.

As things are now, I’m aware of my fibro and the things its done to my life, as well as the fact that my personal pain scale doesn’t match that of someone without chronic pain (like, for instance, most of my doctors, probably). That means I can use my knowledge and this pain scale (which IS helpful in this situation) to rate my daily pain anywhere from a 3 to a 7, depending on various factors.

Even with that, I’ll probably still under report my pain, for two reasons: One, I have gotten very good at ignoring pain. It is pretty much always there, so even if I feel it all the time, I won’t be aware every second. That sounds to me like a 2, but since I know that it interferes with my activities, and that probably some of the pain I am registering conciously only as fatigue, I can consciously boot up the numbers to give the doctors information they’ll understand.

Before I was diagnosed with fibro, I wouldn’t have done that. Even early post diagnosis I wouldn’t necessarily have done that, because it takes time to learn how to talk about your pain when you suddenly learn that actually, you’re not supposed to be in pain all the time.

Before I was diagnosed, I would have put my daily pain at a 1 or a 2 according to this scale, and I still would have to think really hard and pay close attention to all the numbers on this chart in order to not do that. I would also have to overcome a lifetime of people teaching me to push through and not complain about pain.

Now, I don’t necessarily think there’s anything about this chart that could solve that problem, but it is a problem that everyone involved in pretty much any conversation about chronic pain needs to be aware of. It might be good to have a separate chart for chronic pain, or for chronic pain patients to make an individual chart with their doctor, although this still leaves the problem of how someone with chronic pain becomes a chronic pain patient.

I /can/ think of some things doctors could do (ask the right questions, listen better regardless of communication method, explain more, communicate with their patients better, and also just generally not be assholes to their patients).

And I do think it would be helpful if more doctors used this chart. However, without at least one and preferably all parties being aware of how chronic pain works and why this chart doesn’t entirely match up with it, it doesn’t really help much.

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