I Spent Years In Pain Before Doctors Took My Health Issues Seriously

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I hadn’t switched doctors in eight years, and he still hadn’t learned how to say my name. In retrospect, I should have been strong enough to correct him, or to leave, or to find another doctor in a city teeming with them. But I barely had enough energy to chew my food.

This guy was a “Best of New York,” someone I had been referred to by my friend, a med student. He had forty years of work under his belt. I only had fifteen years of pain under mine. So I kept going back, first once a year, then once a season, then once a month, to check on the lump in my throat, which was first the size of an almond, then a walnut, and finally, when I was twenty -nine years old, zeroing in on ping-pong ball territory.

“So listen, Frances-sa. I know we said it all looks fine, and it does—it does. All the biopsies we always do have come back clean, and your thyroid level is well within the accepted range. . . .”

I had my thyroid level checked hundreds of times in that eight-year period. Every kind of doctor I went to, from my gastroenterologist to my PCP to my therapist, all ordered thyroid tests. They always came back “normal.” A normal thyroid hormone range is 0.5 to 5.0 mIU/L. Sometimes I was at 1.5, sometimes 4.5, but never too high or too low to be worrisome to doctors.

This, I have since learned, is common for people with thyroid disease. Thyroid levels can change day by day, time of the month, or time of the year. The only way to really know if your thyroid is functioning properly is to take blood often and see how much it fluctuates.

During this time, I was diagnosed with Crohn’s disease and colitis, two autoimmune diseases (when your body, thinking it is attacking a foreign substance or virus, instead attacks itself). In the case of Crohn’s and colitis, this battle takes place in your intestines. Sometimes the pain is mild and occurs after you eat. Other times it is severe and violent, causing your gut to react by trying to expel the food that upsets it as urgently as possible. Crohn’s and colitis often present with arthritis of the hips and back, and are often married to thyroid malfunction.

So doctors attributed my fatigue and pain to those autoimmune issues, dismissing my assertion that there was something terribly off with my thyroid. It wasn’t until it started doubling in size, that my doctor started to take notice.

“So lean back, and I’ll take the biopsy and, well—wow, that nodule has gotten sizable,” I remember my doctor saying.

“Yes, I thought so too,” I started to speak, but a long, thick needle was aimed at my throat and the same doctor, hovering above me, said:

“Shhhhhh.”

The next few days were a whirlwind. The biopsy was malignant (in previous biopsies he had found only benign tissue), and he immediately scheduled my surgery. Suddenly, I learned I had cancer, and then in two days, I didn’t. But apparently, I’d had it for eight years. And during those eight years, no one believed me when I said something was wrong. The nodule had grown too fast, where it hurt to swallow and I had difficulty speaking. And then in an instant it was gone. My throat was cut.

I know it was not as simple as that, but I felt silenced in an extreme and brutal way—first by being ignored and then by treating me. And the worst part was, I was right.

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