When impossible pain is, in fact, possible

I had my first outpatient surgical procedure when I was still in high school and needed a plantar wart removed from the sole of my foot. As the doctor injected the area with a local anesthetic, he explained he did these procedures all the time, and I wouldn’t feel a thing. After a short wait, he began to dig out the deeply embedded wart with a hooked scalpel.

With the first cut of the scalpel, excruciating pain exploded in my foot, and I was shocked speechless. I froze, paralyzed, terrified that any movement would jostle that knife digging into my flesh. Meanwhile, the doctor and nurse were cheerful and relaxed as they went about this routine task, knowing I was numb.

My first meek protest of pain was met with a friendly, but firm, “That’s impossible because the whole area is completely numb.” I had no idea what was going on, couldn’t even explain the pain to myself, and without some coherent argument, I was too intimidated to complain.

I was a well-behaved kid who had been trained to obey authority figures, and the doctor was clearly the expert in this case. And he had a knife in me, so I concentrated on remaining absolutely still as the incredible pain surged again and again with each cut of that scalpel.

Unknown to me and everyone involved, the anesthetic was completely ineffective. This is one of the more peculiar symptoms of Ehlers-Danlos Syndrome (a genetic connective tissue disorder), but I was not to be diagnosed for another four decades.

I was in agony for those 15 minutes, sweating profusely, and I fainted as soon as they sat me up afterward. But I still believed it was my own fault that it had seemed so painful. I told no one because I knew they wouldn’t believe me. How could they, when I wasn’t even sure I believed myself?

The same thing happened when I needed stitches a few times. The doctors injected a local anesthetic, waited a while, and then simply went to work. I felt each stab and push of the needle, the thread sliding through my skin, and then the tug of tying the knots. Because this procedure is known not to hurt, I didn’t complain about the fierce pain but stayed still to wait it out.

All the authority figures around me were always absolutely certain I was in no pain, no matter how intense it felt to me. If I did mention it, they said it was impossible because they had numbed the site, and kept doing whatever they were doing.

What else could I think but that I was crazy?

Finally, at the age of 54, the mystery of my pain was solved when I was diagnosed with Ehlers-Danlos Syndrome. EDS is a genetic connective tissue disorder, leading to weakness and damage in the body’s collagen scaffolding. From individual cells up to muscles, bones, and organs, all my body structures are weak and prone to damage because the tissue holding everything together is defective.

It was only after my diagnosis that I learned people with EDS are notoriously unresponsive to local anesthetics. Now that I know my pain was always real, I’m angry at myself, angry that I passively allowed myself to be hurt, angry that I didn’t insist and resist.

But how can doctors believe such a patient’s complaints of highly unlikely symptoms that cannot be explained, observed, or verified?

When a patient contradicts what they know to be true, many doctors default to the seemingly obvious response: “that’s impossible.”

Yet, no matter how much we know about a patient’s physical condition, we can never be certain about what’s going on in their body. Statements with words like “always,” “never,” or “impossible” are bound to be wrong sometimes in the practice of an inexact science like medicine.

For some of us, “impossible” pain may be possible after all.

Angelika Byczkowski is a patient with Ehlers-Danlos syndrome who blogs at EDS Info.

Image credit: Shutterstock.com

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