I’m a bit late to make it onto RA Warrior’s Pain Scale blog post roundup, but after reading through some of the entries, I wanted to throw in my two cents. Or maybe 10 cents. I don’t know, we’ll see.

Effectively communicating pain is one of the hardest parts of dealing with a chronic illness. You don’t want to gloss over any pain you’re feeling. At the same time, though, you don’t want to cross over into the territory of complaining or whining. People that don’t have a disease like yours can’t really understand pain levels. When you live with RA, you pretty much feel pain constantly, just at different levels.

Therein lies the problem. When you’re constantly in pain, how can you communicate the levels of pain you’re feeling into something that’s useful for your caretaker and doctors? There’s the good old scale of 1-10 that every ER and urgent care center I’ve been to use. If I’m in the ER, I’m usually in the upper echelons of that scale. But, as I’ve tried to explain before, what might be a 7 or 8 on the pain scale for a “normal” person is most likely going to be a 3 or a 4 for me. Pain that low is easily manageable. However, when I’m at a 7 or 8, a “normal” person might not have the words to describe that sort of pain. In short, it’s impossible to reduce pain down to a number, since perceived levels of pain are different for every person.

Instead of trying to give my pain a number, I try to tell my doctors how the pain is affecting me. I tell them if I feel like I can’t walk. I tell them that the pain is preventing me from picking up a glass of water. I tell them what hurts, what makes it worse, and what it’s keeping me from being able to do. In my experience, this has been far more effective in getting the treatment that I need when I need it. As long as I am as descriptive as I possibly can be, doctors have told me that they understood me better than they would have if I’d simply told them “I’m at a 7 or 8.”

Sadly, I doubt that pain scales are likely to change anytime soon. The world likes things to be packaged into something that’s nice and neat. Also, at least in my experience, many doctors here in the USA focus on getting you out the door as fast as possible. I don’t blame them. I’m sure there’s people higher up on the ladder that have these standards of care in place. But if doctors can’t really tell how bad your pain is, they can’t treat it effectively.

So the next time you’re at the doctor’s office in pain, don’t try to boil it down to a number. Tell the doctor what’s wrong. Tell them why you’re there and not enjoying yourself doing something else. You might be surprised at how smoothly your appointment goes!