Every visit to the rheumatologist begins and ends with measurement of pain, fatigue, and mobility. The only discussion of how the patient is coping is in the context of measuring and assessing medications and other accommodations.
The dreaded assessment tool is handed to you at some point in your visit to rate pain and fatigue. Am I the only one to ever have the image of poking the physician in the eye with the pencil and asking “On a scale of 1 to 10, what is your pain?”?
Let me be clear: I admire and respect my rheumatologist and he is in no danger. However, my point is that the act of measuring the pain as though it is separate from me and is useful in some way to others confounds me.
We say pain is relative, subjective. What this means to me is that you need to know how many good sleeps I’ve had recently. You need to know how the weather is affecting me right now. Are any of my friends and family unwell or having troubles? Am I depressed? When we rate our pain level you need to know the context in which I am existing so the numbers mean something; to make me feel like I have meaning and am not just my pain. To do otherwise is not just dehumanizing, but demoralizing.
I don’t have to understand every test or number in my complex medical history, but understand and appreciate that I am being asked to trust there is meaning and purpose in reducing my pain to a number. Like everything else, trust costs us energy and energy is something those living with chronic pain and fatigue have in limited supply. So, let’s get this right because if this type of assessment tool isn’t giving anyone the information they need to make my life better, then why am I doing it?
It’s not like I think I have all the answers. I just want to have the conversation and isn’t that better than a poke in the eye?