By Andrea Scarpino
The body—sick versus well. Normal versus abnormal. That’s how we tend to think, isn’t it?
But my Mayo Clinic doctors say I am perfectly healthy. Every test looks “normal,” my hormone levels fall within “normal” ranges—even my Thalassemia blood is normal-for-me. And yet, pain. Most months, sometimes month after month continuously, pain in my breasts. My diagnosis: cyclical mastalgia, at the “severe end of the spectrum.”
But the working theories of mastalgia all point to hormonal imbalance—and I don’t have that. My doctors say it’s clear my issues are “hormone mediated” but they are also clear they don’t know what that really means. “We’re working in a gray zone when we work with hormonal levels,” my breast clinic specialist said. And later, “We have no understanding of that yet.”
So, the best they have to offer me: continuous birth control for another three months, topical pain medication, diet change, and a course in mindfulness training. I’ll go back in June and we’ll re-evaluate.
Some frustrations: every doctor seems to want to try every course of treatment anew, under their own watchful eye. The fact that I’ve already tried continuous birth control and diet changes doesn’t matter—I didn’t try either with the advice of Mayo doctors.
And the “What’s another three months?” attitude. As in the gynecologist: “You’ve been in pain so long, what’s another three months?” Which says to me: you don’t know pain. And to which I replied, “Every doctor says ‘three months’ and it’s now been 20 years.’”
Some moments of loveliness: conversations—real, open, honest. After my first breast clinic meeting, I felt—well, crushed. I had hoped—despite myself—for a “Yes, we see this all the time and know just what to do.” And that didn’t happen—no one sees this all the time. No one has a ready cure. But my doctor called the next day and we talked—and she listened and we talked some more. No doctor has ever done that, spent an hour on the phone trying to help me understand her thinking, trying to understand my own. And at our exit appointment, again, her kind attention. Another hour of conversation.
And in the halls, a piano. People stopped randomly and played, sang songs. A woman with a guitar, a man playing jazz. And everyone I met—ultrasound technician, the woman who drew my blood—was kind, patient, treated me with concern.
So there was loveliness within the frustration—or frustration within the loveliness. Like everything, I guess. And I know at least that I need to shift my thinking to pain management, acceptance of a chronic condition. I need to think about coping with this for another 20 years. Or longer—as long as I live. Which isn’t what I was hoping for, but seems to be the closest thing to an answer: normalcy within an abnormal condition. Wellness within pain.
Poet and essayist Andrea Scarpino is a frequent contributor to POTB. You can visit her at: