Why is it so hard to describe your pain?

Pain is probably one of the most universal human experiences. Everyone feels pain at times, whether you’ve stubbed a toe, broken your ankle playing football or developed severe chronic pain like that of Complex Regional Pain Syndrome. Everyone can wince along in sympathy when their best friend relates how they broke their leg falling off a ladder, because even if you haven’t experienced that yourself, you have a store of your own most painful experiences and you can just imagine how nasty it must be.

That’s exactly the problem, though; you may be able to imagine it, but you have absolutely no way of knowing exactly how your friend feels. We are each entirely alone in our pain; it’s just impossible to know whether the sensations you feel are the same as that of anyone else. You will never know whether your tennis elbow aches in exactly the same way your boss’s does, or if your whiplash after that car crash feels just like what your wife went through five years ago. Until science invents a way of putting us inside someone else’s head, we are all destined to only experience our own pain.

Language lets us down

Another problem is that pain isn’t visible. We can see the signs of pain, wincing, grimacing and protecting the painful area, but what if someone is skilled at concealing their pain? I work very hard to hide my pain from others, plastering on a smile and cheerily replying that “I’m fine!” to any questions about how I’m feeling. The reality is that I’m always in pain: after 5 ½ years of spending every second in what I can probably reasonably describe as agony, I’ve completely forgotten what it feels like to lead a pain-free life. The people who know me best can see through the façade, of course, but it doesn’t stop me from doing my utmost to conceal it, simply because of the upset it causes my loved ones to see me in torment. And don’t underestimate the influence of that notorious stiff British upper lip; we Brits just aren’t brought up to talk about vulgar things like, oh, I dunno, our actual true feelings and emotions, so best of luck trying to get me to admit that there’s anything wrong!

We’re also incredibly ill-equipped to describe our pain in words. Our language just can’t do it that well and we end up reaching for metaphor and simile to help us out; it feels like someone’s cutting my leg open, it feels like an electric shock, it’s like a continuous, throbbing ache. The obvious problem here is that these words are imprecise, nebulous and unspecific. No-one’s really cutting your leg open (unless you’re exceptionally unlucky) so although it may help communicate that it really really hurts, it’s not actually that useful a statement.

What about a questionnaire?

Some clinics will ask you to choose words from a list to describe your pain, working from the McGill Pain Questionnaire which was developed in the 1970s. You’re asked to choose whether your pain is beating or pounding, flashing or drilling, stabbing or cutting. There is little difference between many of the choices and even if there were, much depends on individual interpretation of the terms. The questionnaire is a valid attempt to bring some objectivity to this most subjective of sensations, but graphically illustrates the imprecision of language to describe these painful feelings.

As words don’t work, we next reach for numbers in our attempt to adequately communicate our discomfort; is the pain a 1, a 5 or a 10 out of 10? Most pain patients are used to being presented with a sheaf of questionnaires. I have literally spent hours drawing diagrams, ticking boxes, and most crucially, selecting numbers to represent the pain I’ve felt over the last hour, day, week, month, year.

My pain is not your pain

And it is this that really gets us to the nub of the problem. It is simply this: that what constitutes a 10 out of 10 pain-wise for me may well not be a 10 out of 10 for you and it’s impossible to understand all of the factors that may cause one person to pick a 2 and another a 9.

For example, I know some pain patients who were not diagnosed or even taken seriously by doctors for several years, told that their pain was “all in their mind” and left to suffer alone for inhuman amounts of time. When presented with any questionnaire about their pain they automatically reach for the highest number possible, the strongest descriptors, simply because they’re so desperate to have their pain respected and treated. And how can you blame them? I was lucky in being diagnosed with my CRPS at 3 months, but at that same appointment I was told that the average span between onset and diagnosis is 12 years. I cannot even begin to contemplate living with this pain without appropriate treatment for so long. It is literally unthinkable.

What can be done?

In America, there is a move away from simple numeric questionnaires and asking patients to choose words to describe their pain. Pain management teams are starting to ask patients to rate their pain in terms of how it affects their physical or social function, for example, getting out of bed, socialising, conducting personal care. This move brings some objectivity to the field as it’s more possible to gauge the severity of someone’s pain from whether it stops them getting dressed as opposed to whether they consider it an 8 or a 3 out of 10.

There’s also a move towards accepting that pain is not just a physical thing and neither is our perception of it. We all know that things seem more difficult if you’ve had a terrible night’s sleep or you’ve just had an argument with your partner. Pain is no different. Mental state undoubtedly affects how bad we perceive our pain to be and all well-respected pain management departments now treat the psychological elements of pain alongside the physical.

Pain patients are also being taught to expect that their chronic pain will probably not go away entirely. Pain management techniques teach you to live with your pain, not despite it, and accept that it will likely be with you for the long haul. It’s a hard lesson to learn as pain is necessarily intolerable; its function as a safety warning system for our body means that we’re hardwired to try and avoid it. The reality with chronic pain versus the acute pain that occurs immediately after an injury, however, is that chronic pain doesn’t function as a warning system; in chronic pain conditions the painful areas are not at any risk of harm. It takes a huge amount of work to overcome the idea that pain must be stopped at all costs but, when you start to do so, it undoubtedly has an effect on how highly you rate that pain.

Pain is entirely subjective and almost impossible to objectively quantify, but doctors are better positioned to do that now than ever before. I can only hope that the move to further objectify the medical perception of chronic pain continues as I believe it is of great benefit to all pain patients.

And finally…

I began this article by stating that no-one can undergo another’s painful experience. That’s not strictly true. Some enterprising doctors in Holland have developed a childbirth simulator; attached to the stomach it enables men to experience labour, something previously denied to those with a Y chromosome. (I can find no information anywhere to back up my suspicion that the entire development team consisted of some deeply irritated wives looking to get their own back on unsympathetic husbands). If you need a giggle to take your mind off your chronic pain, then check out this video of a man utterly failing to keep his composure as he goes through childbirth. Now that’s objective confirmation that it really hurts.