On May 2, I was offered some rare hope that a pelvic pain condition I had struggled with for many years could improve. My doctor put forward a solid plan for what we would try, with the option of nerve block injections if more conservative treatment didn’t work.
I felt tremendous relief when she told me this. She took the condition seriously. She acknowledged that it was a major concern for me. She knew I had had years of physical therapy with disappointing results. So of course, I left with more pain than before I came in.
Wait, what? Yes, I believe that offering hope to a patient in pain can amplify the pain temporarily. It’s pain that one has become resigned to, and blind to. To exist in a body in pain can cause you to downplay it after a long enough period of time. Action and struggle have failed to liberate you, and they only serve to pain your pain, add alarm to alarm.
An unfortunately common camp of pain treatment attempts to pathologize our very normal reaction to the onset of pain. We are listening to our somatic alarm system and trying to convey its message, only to be accused by those claiming to help us of over-focusing on pain and thus perpetuating it. The accusations are rarely so agitational as I’ve laid out. They come with a saccharine, compassionate face, making them all the more maddening. “Poor thing, so stressed,” they muse, veiling the judgment that you’ve somehow stressed yourself into a medical fiasco. “You’re so much better,” they cheer, as your tissues move to their satisfaction and you grimace from the pain that is blacking out your ability to respond.
It is very easy to convince someone that they are at fault for their situation, even simply by omission. Our evidence-based treatments have been applied, you’re still in pain; well, what’s wrong with you? Didn’t you love all that science? Are you being anti-scientific? Get your mind off the pain and get back to your life.
“But, Nora,” the pain whispers. “I’m still here. I matter.”
In 2013 I allowed myself to be subjected to exercise testing at the OHSU Human Performance Lab. I had been experiencing widespread pain for six months and fatigue for longer. I had to run on the treadmill until I reached maximal effort – a VO2 max – and endorsed that I was too tired to continue. The doctor and his assistant took a blood sample, hooked me up to some electrodes and a blood pressure cuff, and stood me on the treadmill with a spirometer in my mouth. The treadmill was started, and at regular intervals I was asked to rate my perceived level of effort on a scale from 1 to 10.
I said 1 or 2 at the beginning. The speed and incline increased, though I don’t think the pace was any more than twelve minutes per mile. I started to feel uncomfortable. My chest tightened, my muscles burned and yawned, my face flushed hot. I said a 5 or 6. I felt that I would run myself into the ground. The doctor asked if I thought I could go long enough to get just one more reading. I gasped a yes as the room spun. I heard a “Got it!” and then the machine was stopped.
I felt the weight of the workout crash down on me, and the stunned doctor’s eyes on me.
“You said a 5 or 6 when the machine was showing us that your body could not continue any longer,” he said.
I didn’t say anything.
“You are drastically under-perceiving the stress on your body,” he marveled.
Under-perceiving. I had thought for all this time that I was over-perceiving. Others seemed able to accept pain and get on with their lives; why wasn’t I doing that? I guess I was at a 10 and thought I was at a 6. Maybe I also thought everyone else was at a 10.
Every year following that treadmill testing I would receive a new diagnosis – postural orthostatic tachycardia syndrome, lichen sclerosus, vaginismus, adrenal insufficiency, mast cell activation disorder. These were the diagnoses that came up when I barely complained and hid many concerns from the doctor, convinced they could not help. What would they have come up with if I complained a lot? What if I complained in proportion to the problem? Well, I suppose that would mean complaining all day.
I hope I can find the strength to pain my pain more. Let it find its voice. This effin’ hurts and it’s okay.