a woman writing down what her back pain from axial spondyloarthritis feels like for a doctor

Finding a Common Language to Describe My Back Pain

I think about all the years I’ve spent reading, writing, and studying writing, only to find out that I don’t have the words to describe how my back feels with axial spondyloarthritis. In the doctor’s office, there’s a set of standard words that can be applied to pain: stabbing, aching, dull, burning, radiating, throbbing, and so on. But what’s the real difference between aching and throbbing anyway? What if my pain is burning sometimes, and dull at other times? And what if none of these words describe my pain? Do I use them anyway?

While a set of standardized words may be useful to healthcare providers, I find it nearly impossible sometimes to squeeze my back pain into the parameters of those words. Those words can’t hold what I feel--a pain that varies based on circumstance and that evolves as the years pass.

After all, pain is not one-size-fits-all, even when ‘all’ is describing all people who have axial spondyloarthritis. Disease courses vary by person, as does the experience of pain. This is not paint by numbers. My pain does not stay within the lines.

Describing my back pain

I want to describe my pain more colorfully and in my own words because pain is individual and subjective. Some nights when I lay down, my lower back feels as if I’m laying on a billiards ball that’s been placed right at the base of the lumbar region of my spine. The thought makes me cringe. If I sit on a hard surface for too long (and sometimes 30 minutes is too long), I feel like that hard surface is actually an upward force pushing against my spine.

At other times, there are simply annoyingly uncomfortable spots in my back that just feel out-of-place, like a kink in the chain of a bicycle (did I mention I also have scoliosis too?). Then, there’s that hot spot at the base of my spine accompanied by a pain so intense when touched that it hurts to even think about it.

A common language of pain

I don’t tell that to my doctor, or at least not in those words. The conversation at the doctor’s office is often more clinical and objective because there’s a lot at stake. My treatment plan for the next 6 months is at stake, or at least that’s the argument for a common language of pain between myself and my rheumatologist.

Then again, if that common language wasn’t created by those experiencing the pain, then how useful is it really? That’s a hard question to answer. Ultimately, the objective is not only to communicate pain effectively but to do so in a way that the doctor understands. Otherwise, it's all for naught.

What I've learned about describing pain

I’ve learned to use common words for pain, but then add context and detail so that those standardized words don’t have to stand on their own. I keep track of how the pain feels outside of the doctor’s office so that it’s easier to describe the pain inside the doctor’s office. If I’m not sure that I’m communicating well, I ask my doctor if she understands, or if she needs more detail. Most importantly, I try to continually evolve the language I use to describe my pain as my pain itself evolves.

It’s difficult to describe pain. If you too struggle to communicate the nature of your pain, know that you’re not the only one.

What words do you used to describe your pain?
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