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Shout Your Pain!

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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.

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Use It And Lose It

Writing and editing this piece revealed to me some defensiveness. There is a strong impulse to tell – my body does this and this is why – and not show. I think I might know part of why. It’s what I felt I had to do, continually, when friends, medical staff, and authority figures repeatedly failed to mirror to me the experiences of my divergent body, to show me that they were real. Perhaps I appeal to an invisible authority in my writing to hand down some explanations, some realness that I was not afforded. The experience of worsening with exertion rather than improving was so primary to me that I assumed everyone knew what I was talking about. I question what is real even now.

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One thing I wonder if healthy people experience is the sense that activity is actively weakening you rather than strengthening. I have felt before that exercise was eating my muscles or brain.

I started noticing this in maybe my sophomore year of high school. I described it as the “gunk” I would get in my legs after track practice that meant I wouldn’t recover properly from the workout. I knew instinctively that if I rested and avoided running on hills, I would run better than if I did the hard workouts. I remember the almost ill feeling that would come over my legs as I slogged through an interval training session, and the dismay when I would be slower and weaker the next time I ran. My freshest legs and best race times always came at the beginning of the season. “She can run one week, but can’t the next!” my coach once mused.

Why wasn’t I assigned an easier workout regimen? Looking back, this idea seems reasonable. Yet I hazard that it would have run very counter to the culture of competitive running. The standard mantra of athletics (perhaps of society as well) seems to be “no pain no gain”; you push through pain to ultimately achieve resiliency and benefit. You certainly don’t ask for a special exception to be made when everyone else at your level is working so hard. My struggles were easy to typecast as, at best, part and parcel of the painful sport of running – or, at worst, a weakness of character.

When my coaches doubted the urgency of my body’s cries for relief and kept pushing me to do more, I began to question it too. I remember that during my more disastrous workouts, I would write parts of a poem in my head called “The Cross Country Coach’s Lament,” from the perspective of an anguished coach chiding an obstinate runner. “The time that on the clock does read / it matters not to me” is the line I remember the best. “You’ve surest longing in your eyes / yet run so _____ly.” (The adjective never got filled in to my satisfaction.)

However, when the stakes became higher than running a good race, I was forced to contend more seriously with this problem. At the onset of my severe illness, I became so intolerant to exertion that the effort of standing to watch part of my teammates’ race could mean I missed school for the entire next day. I was sleeping up to fourteen hours a day and was scared to shower, feeling that I would pass out. For someone who used to be able run a mile in under six minutes, this was a big shock. I had been diagnosed with celiac disease and inflammatory bowel disease (IBD), but the people I met in online support groups with these conditions didn’t share my “exertion intolerance” problem. Again I found myself the freak, but now I was even a freak among freaks.

The fatigue improved dramatically with biologic treatment for the IBD, but when I tried to gradually return to running the following summer, something seemed off. A leisurely 2- or 3-mile jog at 12-minute-per-mile pace would spike my heart rate to 180. I would finish with a lightheaded, beat-up feeling, and not experience my previous “runner’s high.” I had built up to this level of activity at what was, to me – a former varsity athlete – a painfully slow pace, having started with just walking one time around the block per day and increasing to two blocks when that got too easy. Why wasn’t I feeling stronger? Was this out of proportion to the deconditioning (medical-speak for loss of fitness after long periods of bedrest) that I experienced when I was very ill?

Life with chronic illness flies in the face of what we are told about our own resiliency. I do believe it’s important to try new things fearlessly as often as possible, but to also trust my body and know that it often worries due to very real past upsets. The various ways I’ve learned to protect my body – certain postures, avoidance of certain situations like standing in line, minimal hair and makeup products, saving mental energy by being a bit “rude” – are all very easily stereotyped negatively unless viewed with an open mind.