Doctors Dismissed My Pain For 8 Years Before Finding My Cancer

The first time I experienced serious surgery (more than an outpatient procedure to remove a lump), my thyroid was removed. If there’s a better metaphor for being silenced than to have your throat cut out, I don’t know what it is.

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 there was something terribly off with my thyroid. It wasn’t until it started doubling in size, that my doctor began 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:

“Shhhhh.”

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.

As I have been talking to women about their pain, there is no more common response than an anecdote about feeling silenced. Whether it is by their families, partners, friends or, most often, medical professionals—women in pain feel as though they are not heard, or worse, they are embarrassed into silence.

With my thyroid disease, my joints swelled and hormones got out of control, causing severe muscular-skeletal pain as well as emotional and mental distress. Because of this, as well as the humiliation and shame of my daily life, I was left believing I was worthless, my life was a waste, and it was never going to change. I know now that is a hallmark of depression—feeling worthless—but at the time it was new to me. And it felt like an ending.

A 2001 study, 1The Girl Who Cried Pain1, concludes: “Men are taken more seriously than women when it comes to reporting pain. But it’s not only that, women are dismissed, condescended to, and ignored, often leading to them avoiding to address pain in future situations and keeping them home, suffering, and often perpetuating diseases and injuries that can lead to more and more difficulties down the line, sometimes fatal ones.”

While we cannot assume all dismissal and mistreatment result in silencing, we have to acknowledge there is an inherent gender bias in our healthcare system, which can be extremely dangerous and can lead to a consistent experience of shame. When women speak up about their chronic pain, they are often ignored. This reality permeates the medical system at large but is particularly evident for women who live with chronic pain.

I can’t blame anyone else for not understanding the pain I feel. I can’t blame anyone for inflicting it upon me. I can’t blame nature because I realize I am insignificant in the realm of the universe, and I can’t blame my life because it has been fortunate in almost every other way.

I want anyone else out there who is in pain to understand they are not alone and they are not to blame. What I have found is that there are a lot of us. There are more women in chronic pain in my everyday life than I ever imagined. For me, knowing this has been liberating in a way I didn’t expect. I have lived inside the centrifuge of my own pain for so long, I didn’t realize I didn’t have to be in there all alone. Hearing stories of other women’s pain has brought me to a new place in which I can imagine a future of acceptance for all of us.