Telling It Like It Is: Pain Awareness and Rheumatoid Arthritis

Patient Expert

"Are you in pain right now?"
"Yes. I am always in pain."

I was talking to someone about RA and when she asked me this question, I felt a strange inner shift. It took me a while - several hours, in fact - to realize what had happened. It had been relief. The relief of being honest about my pain. And it made me think.

There is a hush surrounding pain and the experience of pain, a discomfort in listening to someone describe their pain, a discomfort in opening up and sharing the soft and vulnerable within and they connect and conspire to isolate pain within an impermeable bubble of silence. We grow up being taught it is not polite to talk about pain, that we're supposed to quietly suck it up, not wincing or otherwise showing what's happening in our bodies. Those of us who live with chronic pain try to get through with a stiff upper lip, in our personal lives, in our professional lives and often, even in the doctor's office. And I'm starting to think that pretending we're doing better than we are is a problem.

Last Friday, a columnist in The Washington Times wrote "[b]elieve it or not, Congress has designated September as Pain Awareness Month," the eye roll positively leaping off the page. Our requests for pain medication are met with accusations of being a drug seeker. The past year has seen increasingly restrictive measures being taken to control an alleged rampant abuse of opiates, despite research showing that when prescribed and taken correctly, only one quarter of one percent develop an addiction to narcotics.

Would journalists feel free to scoff at the idea of a Pain Awareness Month if they knew more about what pain is, how limits us and how it shortchanges not just those of us who live with pain, but our families, friends and employers? Would asking for pain meds be viewed with suspicion if doctors knew the true impact of living in pain? And would our governments be quite so punitive if more was known about the cost of pain, both to individuals and to society through our inability to participate when untreated? Would the stigma be less? Maybe, if more was known about the true incidence and experience of pain, if the silence was broken, others would not reflexively talk to us about the risk of addiction, but instead, ask about how bad the pain must be to make a prescription for the big painkillers necessary. And then maybe, they would ask what we are able to do once the pain is treated.

Pain can be paralyzing, pain can isolate, keeping you inside, keeping you silent. Outside, the world moves on while you live in the bubble, cut off from taking part in life, sucking it up and somehow getting through the day. And through it all, we hold our tongues. But what if we didn't?

What if we didn't stop making our surroundings aware of pain in all its aspects on October 1 when the Pain Awareness Month is over? What would happen if we stopped pretending, started sharing the reality of living within chronic pain? I don't mean walking around with an S for Suffering tattooed on our foreheads - being too aware of your pain in this particular way has a tendency to take over your life - but being honest about our pain. Allowing that wince to pass over our faces, taking the pain meds out in the open, instead of pretending to go to the bathroom so we can swallow the pills in private. When invited to go out dancing, instead of claiming other plans or the flu and stay at home, feeling lonely, say that it'll hurt too much and suggest a change of plans to something less physically active. Instead of using all your energy at work, leaving you exhausted in bed the entire weekend, running out of sick days used for healing, ask your employer for accommodations, ways of making the job easier on you physically so you can get back to doing your job. And when your doctor asks how you're feeling, let them know exactly how much the pain interferes with your ability to work, to parent, to enjoy your life and to laugh.

And maybe it gets bigger then that. Maybe we start talking to our elected representatives about pain and push them about their position on policies that control the treatment of pain, remind them that we vote, too. We could join organizations like the American Pain Foundation (or its equivalent in other countries), adding power to the groups that lobby for reasonable pain policies. We could write letters to medical schools, challenging them to develop a curriculum that includes meaningful learning about pain management so new doctors know what to do when their patients have chronic pain.

Pain awareness is not just for the month of September anymore. Imagine what could happen by this time next year if we all broke the silence.

You can read more of Lene's writing on The Seated View.