September has always been about beginnings. As a child, it meant it was time to start school again. As a producer living in New York, September was the annual kick off of a new performance season. Three years ago, September became the month when I experienced a level of pain so severe that I was forced to admit something was going wrong. September then became the month I was first tested for an autoimmune disease called rheumatoid arthritis; the first month in which I contemplated what living with pain for the rest of my life might mean. It turns out that September also happens to be National Pain Awareness month. Go figure.
For those of us living with rheumatoid arthritis, pain is a force with which we are all too familiar. Sure, before RA, most of us had probably experienced our fair share of pain from broken bones, braces, or even the emotional pain of a broken heart. But the pain that comes with a disease like RA alters one’s awareness and understanding of pain in a deeply personal, permanent way.
My relationship with pain, and I do consider it a relationship, is puzzling and conflicting. On the one sense, I know that pain is a warning from my body meant to try and protect me- to make me aware that something is going on inside me that is harmful. But when my body is also the cause of that harm, the pain being produced by it takes on a perverse, twisted meaning, making me aware that pain has many dimensions. For me, the pain my RA causes creates distinct emotional responses depending on where the pain is located. Before my enbrel kicked in, the pain I felt in my left shoulder every time I tried to lift my left arm produced a feeling of being wounded, of sadness. Conversely, the pain I felt in my right collarbone whenever I moved my right arm spawned a sharp stab of anger and irritation. Other pains in my body brought out feelings of pity, shock and often, fear.
Now that my meds have kicked in, I (gratefully) experience much less pain than I did before, but it still creeps into my life on a near daily basis. Sometimes it is faint, like a residue I can’t seem to wash off but can mostly overlook. Other times, it is abrasive and disarming, worming its way into my consciousness with a fierceness that can be crushing. Still, at other times, it elicits an adolescent-like rebellion in me, where I feel a deep sense of betrayal from my body and want nothing more than to disobey and raise a proverbial finger in its face.
And yet, all of this typically occurs without any visible evidence to anyone around me. Even in the midst of my most intense bouts of physical pain, save for the expression on my face, there is nothing about me that would ever signal to someone else that I am in the depths of mind-blowing, physically debilitating pain. Most often, one of the tiniest joints in my body is responsible for this bizarre dichotomy. My little toe joint, The One where it all began, will spring to life with no apparent cause or trigger. It begins with a twinge, which then grows into a throb, followed by a sensation of burning, as if someone has lit a match to the lining around my toe joint and set it on fire. From there, it is a rollicking ride of shooting pains that spread from my toe all the way up to the pit of my stomach. I usually feel like I’m going to puke. Typically, this happens while I’m sitting docilely in a meeting, trying to be attentive and engaged. Or sometimes it happens on a date. Pain is a bitch.
Given how complex and flawed my own understanding of pain is, it’s no wonder that it’s so difficult for other people to understand it. Plus, pain makes people feel helpless. They may know that you are experiencing it, but they can’t see it, and they sure as hell can’t feel it. Even the most empathetic, compassionate person can never know what your pain or my pain feels like. We only really know our own pain. And let’s face it, most of the time, people would prefer to ignore pain and pretend it doesn’t exist in an effort to protect themselves from it. Pain is something to avoid, often at all costs. Unfortunately when you are the one in it, especially if it is constant and chronic, it’s about the only thing you can think of, and this can lead to feeling isolated and helpless.
So what to do about it? Perhaps National Pain Awareness month should be followed by National Pain Management month – after all, if pain is something that is going to be present, then at a certain point, you have to figure out how you can live with it. Talking about this with your rheumatologist is vital, and the first step is making sure they understand and are aware of how much pain you are experiencing, and what it’s keeping you from doing. From there, you make your game plan, which may include medications, supplements, changes to diet, exercise, yoga, tai chi, acupuncture, massage and even laughter. Finding support to help you through the worst moments is critical, so figure out how you can make your friends and family aware of your pain and aware of what they can do to help.
Sara is the author of the blog The Single Gal’s Guide to Rheumatoid Arthritis.