One of my biggest issues with medical appointments as a chronic illness patient is the traditional pain scale, aka, “How much pain are you in out of 10?” I’m not the only one who feels this way – Hyperbole and a Half has an AMAZING post about this – and I’ve even had medical professionals tell me that they aren’t happy with it. Here’s why, and some ideas of where we can go from here..
The scale doesn’t feel accurate – Assigning numbers to my pain doesn’t provide a good description of it. Adjectives are a much better fit since there are different types of pain that could be the same number. For example, one day my pain could be a 6/10 and be dull and achy but the next day it could be a 6/10 and be burning and stinging. In both cases, I strongly believe a 6 is the right number, but the pain is very different. How can those numbers be accurate, then?
What the numeric values mean varies from person to person – We haven’t all experienced the same things, so we can’t all imagine the same type of pain and what of that would be a 10 (or any other number in the scale). Some hospitals or medical offices have descriptive words or phrases with the faces of an out-of-10 pain scale, but even then I’ve seen different descriptions for the same number. In some places, “mild pain” might be a 4, but in others, it’s a 2. And there’s no way that we can verify that everyone’s numbers are actually all equal with one another, which further shows that there isn’t much purpose in using the standard scales if they’re not actually standard.
The meaning of the numbers can change over time – What would have been my 10/10 when I was 10 is probably my 6 now that I’ve experienced have major surgery and no pain meds in my system (that’s a story I told here, so I’m not going to get into it now). Trust me, you can’t imagine the pain of having a 4″ screw go through your ankle unless you’ve experienced something similar. So if you’re an adult and you’ve never experienced a severe pain like that, how can you really know what your pain is? You have an idea of what’s a 10, but you’re just imagining. For the record, this is not meant to say that you don’t understand pain, just that your understand of what a 10 is is more imagining what that would be like than having concrete knowledge.
Different types of pain can be the same number – This goes back to using adjectives to describe pain. My pain might be a 6/10 and be achy or burning or stinging or whatever (you get the idea). But when describing my pain in each of these situations, I would without a doubt label them all a 6/10. These different situations generally mean different types of things are causing the pain, but it doesn’t change the fact that a doctor would ask me what number I would assign to my pain first and foremost. I’ve had some doctors then ask me to describe the pain, but others leave it at a number.
So where do we go from here? We need to decide on a new pain scale, and maybe that means taking elements of the current scale and expanding on those. For example, like I mentioned, in some places, there are descriptive phrases that go along with the numbers, such as “mild,” “unable to ignore,” and “can’t do anything.” Maybe we should create a new scale that is entirely made of phrases like this instead of using numbers. Or maybe we keep the numbers and just add descriptors that are standardized at every medical office. While we decide what will replace those annoying numbers alone, enjoy Hyperbole and a Half’s scale, which includes descriptors such as “mauled by a bear” (everyone should go read that post just because it’s amazing).
What do you think a new pain scale should include?
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
I really hate this pain scale too. The last thing I want to think about when I’m in a great deal of pain is how to “grade” it so I can accurately get it across to my medical professional.
Exactly! And what’s so frustrating is that every medical professional has a different idea of what the different numbers mean and different opinions on what WE think the different numbers mean.
Ugh I hate the numeric pain scale so much. If it came with a rubric so that I can say “6” and know that “6” is “is constantly on my mind, inhibits some activity, but still able to mostly function” is what the docs think a 6 is it would be useful. Like I’ve had docs go “oh shit” when I’m like “okay yeah this is like an 8 right now but like for reference I gave a broken rib a 4” because they were treating my 8 as “is mildly inconvenienced and doesn’t actually know what pain feels like because they’ve never felt Serious Pain in their life”. A rubric would ensure we’re both on the same page about stuff.
That’s so true! But then the issue is that everyone would need to have the same rubric because the last thing we need is for different numbers to have different meanings to different hospitals/medical professionals.
Yeah that’s true, or just if you included a rubric when filling out intake forms where they ask you to rate your pain or something. Really anything is better than the current setup of just “give me a number between 1 and 10 where 10 is the worst pain ever”.
And I hate how most people think of a pain scale as like a linear scale because it tends to be spread way more towards favoring minor pains. I think a logarithmic scale makes more sense and how I envision a numeric pain scale, where increasing 1 number is increasing pain by 10x (like the Richter Scale for earthquakes) because it better captures the full range of pain imo. BUT since that’s not how people (esp doctors) envision that scale, that just makes my head hurt trying to sort from that to a number that doctors will understand.
My old back Dr,(I fired him after this) who is, I’m disgusted to say, also a pain Dr, while discussing my pain, told me a sincere and emotional story of dropping his computer tower on his finger. He was down playing pain in general because THAT was the worst pain he ever experienced in his life but this hero Dr dried his tears, did not turn to pain medications, and weathered this great storm in his life. What a trooper. Six years ago I fell. I broke 2 vertiba. I was living in Oklahoma at the time where they had already started the war on opiates. They conducted this war not by going after drug traffickers or dealers or even adicts. Those guys sometimes have guns and it takes police work to build a case against them. Instead they went into the Drs offices, and using their vast medical knowledge as attorneys, started throwing Drs prescribing what THEY thought was too many pain meds in jail. Their idea of too much was any at all. So instead of the medical community locking arms and fighting back, they stopped giving any diagnosis that would require the application of pain medications. So a broken back, with pictures to prove it, turned into “you are simply depressed Mr. McClure, here is your bucket of antidepressants” and soon my bones fused back together locking me in a permenant state of pain. I’ve gone from a 30 year career, carefully constructed, and guided, to reach one goal after another to now 50 years old and jobless, moneyless and soon to be homeless. I was already doing very well but I was on schedule to have the experience and the resume to really kick ass in my 50s as a management leader in my field and reap the rewards of a lifetime of hard work and sacrifice. I went from owning my own little $.5M per year industrial company to going back to working for the man for $40,then$30 an hour, then $55k per year and now to being laid off or suspended because I can’t do the things I use to do. I’ve been pretending for the last 5 years so I can have a job and insurance. Once I start not meeting expectations they always find a way to get rid of me, because 24/7 pain, weakness, and slow moving, looks exactly like just another lazy fucker, full of excuses and zero motivation. I generally work in higher tech jobs but the screaming in my head all day and night, everyday and night, reduces my attention span and my mental bandwidth to a single input. I can concentrate on ONLY one thing and I get so distracted I rarely even finish my own thoughts. So I think pain can be measured in personal loss and how much ceasing to exist is more logical than the thought of another 30 years of this shit. In reality it doesn’t matter, people in pain will never get a fair shake. Sorry kids, that’s just experience talking and I’ll grant you, a lot of bitterness and anger. Okay, SO, that’s just me. I mean I’ve never ever dropped my computer tower on my finger or anything so… what the hell do I know.