Originally published on The Rumpus (June 2019) 

It arrives like clockwork in the early evening—a tingle, a subtle burning sensation. By bedtime, it’s at its peak, a field of pinpricks. Though these uncomfortable changes take up but a small piece of corporeal real estate, they vex me. I suffer from a poorly understood condition with no cause and no treatment called Burning Tongue Syndrome (BTS). It’s also known as glossodynia, which sounds like a chic brand of lipstick, but is instead a daily annoyance that garners no sympathy from the public and no attention from the medical community. Perhaps doctors and researchers are justified; it is neither life threatening nor dangerous. I’m grateful that, at fifty-nine years of age, this is one of my few health problems. And I can’t forget, even when I’m suffering, that a woman’s tongue weighs heavily in our collective unconscious. It is a damning incriminator, an erotic muscle, and an instrument for disrespect. The Chinese proverb warns “the tongue is the sword of the woman—and she never lets it go rusty.”

At first, I blamed the symptoms on myself: Did I guzzle hot coffee and scald my tongue? Did I somehow manage to spray small amount of perfume when my mouth was open? What had I done to experience this strange, metallic sensation? But the burning arrived night after night regardless of what I ate or drank. A bit of googling along with my physician husband’s UpToDate app and I landed on the solution to the mystery.

With Burning Tongue, there is no “look-at-this” rash or other manifestation. This makes it the perfect it’s-all-in-your-head (literally) syndrome. I nodded in recognition at a passage in Leslie Jamison’s essay about people afflicted with the controversial Morgellons disease: “physical symptoms can offer their own form of relief—they make suffering visible.” No matter how long I look at my tongue or show it to others, even when it is peaking in pain, there is nothing to see. Nothing to share but my complaint.

Burning Tongue is a “diagnosis of exclusion” according to medical journals—a phrase that means once you rule out vitamin deficiencies and other problems, you’re left with a condition that has a name but nothing else to offer in terms of how and why. When researchers do turn their attention to it, you sense their frustration. I loved this near poetic tongue twister from a medical journal: “This condition is … often idiopathic, and its etiopathogenesis remains largely enigmatic.” Translation: Your guess is as good as mine.

Burning Tongue affects women seven times more than men and seventy percent of women who suffer from it are over fifty. Its prevalence is estimated as eighteen to thirty-three percent in postmenopausal women. It falls into the category of menopausal symptoms categorized as “quality of life” issues like hot flashes. (I wonder whether there should be an insurance code for invisibility, that other ubiquitous experience of late middle age females?) Our post-fertility bodies, no longer wonderlands but inscrutable landscapes, best layered over with boxy Eileen Fisher ensembles or wholly ignored behind cat-eye readers, under chunky necklaces of resin and rhinestone and daring flares of pink hair, become risible, devalued objects. Burning Tongue is one of many complaints we are expected to downplay.

In a recent research article about Burning Tongue, the lead investigator wrote, “afflicted patients often feel that their surroundings and healthcare professionals doubt their ailment.” I’m not surprised to hear that. It’s a common experience for women (especially of a certain age) to be doubted about pain. We are too often looked upon as hysterical when expressing heightened emotion. Commenting on Serena Williams’s Nike ad “Dream Crazier,” columnist Maya Salam writes in the New York Times, “Women being labeled hysterical or crazy as a way to degrade them dates back centuries.”

I joined a Facebook support group for women with Burning Tongue and discovered that many experience it more acutely than I do. Their struggles often interfere with daily activities. One woman wrote:

This marks twenty months since I woke up with my tongue ablaze. I never imagined, as I dialed my doctor’s number, that hundreds of days, nights, pills, potions, and dollars later, I’d still be in pain and barely recognizable to myself, family, and friends.

When I incidentally mentioned the mysterious symptoms to my oral surgeon, he threw his hands up in the air and said, “Don’t tell me you’ve got that.” I found it ironic that his first reaction, albeit rhetorically, was to silence me.

That’s when it struck me that Burning Tongue Syndrome is an apt metaphor for my experiences as a woman—wife, mother, daughter—who routinely defaults to holding her tongue. It is as if my tongue now burns in admonishment for all the words I held back. Educated in strict Catholic tradition, I swallowed my words of doubt. In bed with a man eight years my senior when I was fifteen, I was a body of silent consent, though the law said otherwise. Raised by and with substance abusers, I longed to spit out the words that would make them stop, but only dreamed about it. In law school, I recall on more than one occasion providing the correct answer, but sounding so unsure about it that I was put to task with the professor’s response: “Are you asking me or telling me?” My husband is a wonderful mate, but in the heat of an argument has been known to say, “You’re not allowed to get angry,” and I have been known to back down in silence. I was invited onto a charitable board and sat at dozens of meetings and never said more than as many words, afraid I’d sound stupid or offensive or redundant. I eventually quit and felt like a failure. Now, as I approach my sixth decade, it is as if I am being reminded that now (or never) is the time to take the words on the tip of my tongue and speak.

The tongue—in particular the removal of a woman’s tongue—has a long literary and historical legacy. As Johannah King-Slutzky states in her comprehensive essay on the subject, “In the Western tradition, tonguelessness is ritualistic and punitive.” She goes on to detail the Greek myth of Philomena, whose tongue was torn from her mouth by her rapist brother-in-law to prevent her from revealing the crime he committed against her. In the unsanitized version of “The Little Mermaid“ the protagonist is presented with a bargain by the Sea Witch—the price she must pay for gaining legs, living on land, and winning the prince, is the loss of her tongue.

“You have the sweetest voice of any who dwell here in the depths of the sea, and you believe that you will be able to charm the prince with it also, but this voice you must give to me,” the Sea Witch says, “The best thing you possess will I have for the price of my draught.” Then she cut off the mermaid’s tongue, so that she became dumb, and would never again speak or sing.

– Hans Christian Anderson, “The Little Mermaid“

In the Disney movie version, there is no tongue amputation. It is far too blunt, final, and traumatic for family viewing. The original version, however, reveals the power, value, and fear of a woman’s tongue—as a muscle to seduce and charm. She must lose her tongue to negotiate her freedom. What price have we paid for our silence?

A woman’s tongue, when viewed as an instrument of criticism, is often subject to male retaliation. A female opinion is too dangerous to ignore and must be stopped or punished. King-Slutzky reports on a form of physical punishment called a “scold’s bridle”—a head cage with a flat protrusion (sometimes spiked) for the tongue forced upon women if they offended their husband or father with words. Used from the 1500s to the 1800s in Scotland and England, the two-inch long bridle bit was slid into the mouth to compress the tongue and created severe discomfort. Likewise, American slave masters utilized instruments of torture placed in the mouths of slaves, depressing their tongues and making it almost impossible for them to swallow their own saliva.

While the bridle fell into disuse, other forms of mutilation still occur. A deeply disturbing Facebook video entitled “Tongue of Lady is Burnt Before Marriage” shows a man heating a small shovel over a flame and then placing the white-hot metal against a kneeling woman’s tongue several times. Afterward, in visible pain, she is comforted by another man. I had the video translated. The torture was administered because the woman was accused of stealing money from the “marital home.” According to the judge of this ceremony, “If burns appear on her tongue, this indicates her condemnation.” Luckily, this unfortunate woman was found to be innocent of the crime though it appears that she had already paid dearly for the unfounded charge.

Lest we dismiss this, or write it off as some ancient custom far removed from contemporary life and thus from our own experience, consider a Washington man accused in 2016 of cutting out his wife’s tongue “as a sign to other women,” according to police reports, “that they needed to not mock men the way that the victim had been mocking him.”

Beyond mutilation, silencing a woman’s voice is accomplished in dozens of ways both physical and non-physical. As Fiona Landers writes:

There is a pull, a fiercely ingrained pull, to mute a woman’s voice until it coos. To press it down until it is as small and sweet as a pastel after-dinner mint. To control it. To silence it. It can be done violently. A clammy hand can wrap around her face and forcibly palm her mouth shut. It can be done playfully. An entitled finger can press gently to her lips, shushing her into subordination.

Women of color, members of the LQBTA community, and those with disabilities face even more profound silencing. It is pervasive and institutionalized. Jess McHugh writes that “women of color like [Roxane] Gay and [Maxine] Waters are criticized more sharply than white women for everything from their tone of voice, to their choice of words, to the volume of their delivery.”

The tongue is the sword of the woman. My burning tongue reminds me I must never let it go rusty. That I can complain about my tongue even if there are no bumps or blisters to “prove it.” That I am neither hysterical nor histrionic when I mention I am having a bad day or night with it. That I am worthy of compassion. That I am not just looking for attention. That even if I am looking for attention, I am worthy of that as well.

I count myself lucky to be in the company of other women—female friends and family members—who are excellent role models at speaking their minds. I have become much wiser and stronger following their lead. My older sister takes no guff when dealing with surly sales people; my friend Lauren, a movie producer, holds her own in a room full of male executives. My daughter, outspoken and candid about her body, her rights, her opinion, rarely apologizes.

Perimenopausal and menopausal women are accustomed to being invisible and unheard. We are used to the sensation of biting our tongues. Used to thinking twice (or more?) about the words we utter. We wonder always—is this the right time to speak, the right choice of words, what if I’m wrong or offensive or loud?

The possible causes of Burning Tongue Syndrome—allergies, anxiety, depression, nerve damage, stress, or badly fitting dentures—sound like a wastebasket of half-assed possibilities, many of them on the psychosomatic spectrum. To avoid symptoms, WebMD suggests avoiding alcohol, cinnamon, mint, and spicy food, and taking up stress-reducing habits like yoga. I stopped drinking alcohol nine months ago. The spiciest food I eat is crushed tomatoes mixed with tuna fish. I meditate twice a day. I exercise and include yoga in my weekly schedule. None of this has brought relief. The only medication that has a therapeutic effect is Klonopin—a sedative—and I can’t recommend it. I am too ambitious and busy to be sleepy. I have far too much to say.