“It’s all very well telling me to ‘walk through the pain,’ to stay positive, but there are layers and layers of pain.”
—hareinthemoon, The Chronic Pain Files
Maybe that’s because the people who say this in such a blithe and sincere way only understand—and can empathize or sympathize with—the kinds of pain one experiences during exercise, or perhaps some types of acute pain, like stubbing a toe or skinning a knee. I can, myself, easily understand that exhortation in those contexts. Who hasn’t “walked through” or “worked through” stiff, painful muscles? It can hurt like a you-know-what until the offended muscles warm and loosen up, or until that magical “runner’s high” kicks in. And a stubbed toe? Hurts like the blazes—until it suddenly doesn’t.
But I sort of doubt they’d be so thoughtless as to tell you to walk through the pain of a badly sprained ankle or a broken leg. Nor would they expect you to “work through” the deep, gut-twisting pain of appendicitis or the urgent, lancing throb of an abscessed tooth. That kind of pain is different.
Pain’s First Layer
This, like the thin, papery skin of an onion, is the one I live with every single day. I don’t even think of it as pain, per se; I’ve had it for so long, it’s part of my being. My hands are always tender. I utter my first “ow” under my breath when I push the blankets off when I get up in the morning. I whisper it again when I fill the coffee pot, and again when I dry off after a shower.
This first layer of pain is the easiest for me to “work through,” since it barely breaks into my conscious thought. When it does, it usually surprises me. “Well, ow!” I think, and I remember, suddenly, when wringing out a washcloth didn’t hurt. Oh, well. Nothing for it. Carry on.
The Second Layer
This one is thicker. (An aside, here: I never know which layer I’m going to get, or when. RD is capricious and more than a little cruel). This layer is harder to ignore, though it depends on what I’m doing, and I can almost always “work through it.” The “ow’s” go from whispers to soft yelps. This pain affects my mood—I might get a little quiet, or even grumpy—unless I’m involved in something that can help keep my mind off it. This second layer of the pain onion always comes with a sneaky little mist of fear, too: will it get worse?
These first two layers usually respond, at least temporarily, to gentle alternative pain therapies, like ice or heat packs, paraffin baths, or over-the-counter pain relievers and salves. Meditation sometimes helps. Distraction does, too.
Once I hit the third layer of the pain onion, though, things are getting more serious. Now, using my hands for almost anything takes grim determination. All movement hurts; pressure hurts bad. The therapies I mentioned above are soothing, but that’s about all (and soothing is something, at least, when you don’t have any other options). The fear juice is dripping from the pain onion now. It’s making my eyes tear up. It’s hard not to worry about whether it will get worse.
This is when I go for serious distraction: an absorbing book, a good movie, etc. Because my work requires typing, this layer of pain can put a wrench in the works, though often I do “work through it,” as those nice, clueless people suggest. OTC pain relievers aren’t much use, here. Gritted-teeth-type courage is.
The Inner Layers
When it gets to the fourth, fifth, and even deeper inner layers, nothing but prescription opioid pain relievers really help. But because of the so-called “opioid epidemic,” many doctors are afraid to prescribe them these days, leaving chronic pain patients to suffer terribly.
I’m fortunate to have a pain specialist who does prescribe low-dose opioids for me. When these deeper layers of pain hit, I take them. No apologies. They don’t make me high. They simply drop the pain back a layer or two, and usually, I can get on with my work and my day. I’m grateful to have access to these miracle drugs. Fingers crossed (ow!) they’ll keep working.
I’ve lived with my RD pain without the benefit of narcotic pain killers in the past. It was excruciating. Just as living with the pain of a crushed hand or a broken leg would be, there’s no “working through it.” It’s all-encompassing. It’s disabling. For as long as it lasts—two hours or two weeks or two months—it becomes the only thing in my life.
Ignorance is Bliss
People who don’t live with RD and other forms of chronic pain are ignorant of its layers. They have no idea how much pain each of us “works through” all the time. They don’t know that we may live with it every single day of our lives, and no clue as to the kind of courage this takes, or why we sometimes get a little cranky when they suggest that we just treat our pain with some exercise or meditation or, maybe, some aspirin.
Pain really does have layers, just like an onion. And its vaporous juice is fear—not of the unknown, but of the deeper layers of pain we know. This takes a special kind of strength and courage. People who don’t have chronic pain can never really understand.