Finding a Face for My Invisible Illness

I’m not sure I could’ve told you where the thyroid was located until an endocrinologist pressed an ultrasound wand against my throat. The location of the gland, like the ultrasound itself, was a surprise. I’d come to this doctor after several months of unexplained symptoms and “abnormal” blood work. As I lay flat on my back, the ultrasound wand exerting a choking pressure on my neck, it occurred to me that this problem might be more serious than I’d wanted to think.

Even as my thyroid appeared onscreen in grainy resolution, its shape remained vague. Only fleecy white static with a smattering of black spots. Those spots, the doctor helpfully explained, weren’t supposed to be there. They were holes that my immune system was creating. My body had mistaken its own tissue as an invader, dangerous as any pathogen. In its besieged state, my thyroid was releasing an alternating flood and a trickle of hormones that affected my heart, brain, muscles, and a dozen bodily functions.

When the endocrinologist removed the slick wand from my throat, he asked about my symptoms.

“Any hair loss, hoarse voice, fatigue or irritability, strange menstrual cycles?”

The symptoms seemed so straightforward, so unlike what I’d been experiencing, that for a moment I didn’t answer. I didn’t even understand what a thyroid was meant to do. The endocrine system was made up of buried, secretive organs—the thymus, the thyroid, the pancreas, the pituitary—that never made it into pop songs or nursery rhymes. Hair loss or a hoarse voice or a rash would’ve made the mysterious darkness tangible, easier to define. But I didn’t know how to explain that it felt as if my entire body were devouring itself from the inside out. It wasn’t a sensation of heat or pain or hunger, but more the feeling that I’d long ago swallowed a poison pellet and its slow, destructive alchemy was only now becoming apparent.

For years, bouts of lethargy had struck without warning, confusing my family doctor because I always tested negative for mononucleosis. I went through alternating episodes of weight gain and loss, none of them especially alarming. There was my inability to stay warm, and the pounding heart palpitations, and the propensity to get sick more often than everyone else.

Things had been getting worse as my thyroid disintegrated. Tremors and light-headedness. Panic attacks striking like the ripples of an earthquake. I’d be surrounded by grad school classmates, our professors discussing how photojournalists compose shots or the strategies for covering mass shootings—and suddenly my body stopped believing that my lungs were full of oxygen. I panted and sweated and, once, twisted a mechanical pencil underneath my desk so tightly that the plastic casing cracked. Sleep often seemed impossible. Instead, I mastered Sudoku, playing timed games on my tablet till I was able to solve the “difficult” puzzles in under ten minutes. I took nighttime walks around Manhattan with my boyfriend, trying to muffle the terrifying vibrations of my heart.

“I feel terrible,” I told the endocrinologist.

He said he expected as much, given the state of my thyroid. The good news was that thyroid hormone supplements would make me feel better. But unfortunately, the autoimmune disease he diagnosed me with—Hashimoto’s thyroiditis—was incurable.

It was an enormous relief to put a name to the cluster of symptoms. But alongside that relief was a mountain of inarticulable questions. Illness, to me, had always seemed to exist exclusively on two poles: the inconvenient or the deadly. This binary thinking indicates both the privilege of the healthy and the power of the wellness industry: You trick yourself into believing that health is something that can be earned. Now I was discovering an ocean of other illnesses between the two poles, and I’d gotten myself stranded.

“You’ll have this for the rest of your life,” the doctor said. Treatments should help stabilize the hormones in my bloodstream, but my thyroid would always have holes in it. I would never recross the boundary back into good health. Yet, as had been the case for years, this autoimmune carnage would remain invisible to the human eye.

I did not feel fine. I would not feel fine for years.

Because I didn’t know how to reconcile these two things—permanently sick, but visibly healthy—I would spend several more years hiding the illness. I told none of my professors and very few of my friends. I scheduled appointments around my classes, occasionally visited urgent care when my symptoms became alarming, and tried to act like everything was fine.

I did not feel fine. I would not feel fine for years. But this not-fine-ness was part of that mountain of unspeakable questions. I could only acknowledge my illness from sly, sideways angles—a hobbit stealing from a sleeping dragon’s hoard. I wanted proof that my sickness was real, but I was also scared of making it too real. So I bought a green pill case with seven panels to hold my new medication; I created a short audio documentary about Hashimoto’s for one of my classes, using a poorly thought-out Pac-Man metaphor to make light of the illness; I took up running.

And everywhere, I looked for someone or something that might help me feel less alone.

*

Physicians have been treating goiters for millennia, but it took thousands of years for anyone to recognize their link to the thyroid. The goiters’ characteristic bulging lumps have been carved into the necks of statues, captured and detailed in paintings. The Andes and the Alps were known to have a high number of afflicted people, leading Romans to theorize that the swelling came from bad drinking water; meanwhile, Greek physicians attributed it to a herniated larynx. Treatments were as wide-ranging as eating mollusk shells to undergoing dangerous surgery.

Da Vinci was the first person to draw the thyroid, in 1510. He speculated that its purpose was to cushion the trachea from the neck bones. The honor of naming the little gland went to English anatomist Thomas Wharton in 1656, and he hypothesized that the thyroid heated the area surrounding it and lubricated the neck.

It wasn’t until the nineteenth century that scientists realized thyroids were producing hormones that regulated body temperature, metabolism, growth, heart rate, and energy. Far from mere throat cushions or neck warmers, thyroids are essential to keeping a human alive and well. As for goiters, they were almost always caused by iodine deficiency. Iodized salt gradually became commonplace, and getting a regular supply of iodine helped the swelling in about ninety percent of cases. But that still left the more complicated issues of thyroid disease.

In the 1850s, when scientists identified the hormones produced by the thyroid and explained the pathologies caused by too much or too little of them in the body, they also identified two types of related autoimmune disease: The first, Graves’ disease, occurs when the immune system produces antibodies that stimulate a higher production of thyroid hormones. With the second, Hashimoto’s disease, the immune system produces antibodies that attack the thyroid, making it less able to regulate the amount of hormone.

Soon after they named the diseases, doctors started exploring how to control them. No one spent much time trying to cure the diseases; beyond symptom management, the immune system was too complex a force to be reckoned with. Once the self-destruct switch was activated, there was no way of stopping it.

In the 1940s, a synthetic thyroid hormone, levothyroxine, started to be manufactured as a treatment for Hashimoto’s. The methods for treating Graves’ disease were more severe. Generally, the thyroid would be irradiated. The patient, formerly suffering from overactive thyroid, was reduced to a state of very low hormone production and placed on levothyroxine. Problem solved.

Seventy to ninety percent of patients with autoimmune thyroid disease are women. I can’t help but wonder if these treatments would’ve been different if there had historically been more female physicians, or more men with thyroid problems. The very people left out of medicine for much of its recorded history, the ones who have been told, at least in many Western cultures, to be self-effacing and docile, whose pain has been disbelieved or labeled “hysteria,” are also the ones most likely to fall ill with these invisible diseases.

*

When the endocrinologist diagnosed me with Hashimoto’s thyroiditis, I didn’t realize I was joining a family club. Apart from my grandfather’s painfully unavoidable death caused by ALS, we didn’t talk much about health problems. The day I called my parents to tell them my diagnosis was the first time I learned that my paternal grandmother, two uncles, and three aunts all had Hashimoto’s or Graves’ disease. Eventually, my mom and my maternal grandfather would start feeling its effects as well.

These revelations were unsettling. For twenty-three years, I’d perceived my parents, my brother, my grandparents, and my large extended family as “healthy.” No one had heart disease; very few had cancer. My own body was a useful and obedient tool. I ate my fruits and vegetables, exercised on a regular basis, followed a largely vegetarian diet.

That was how I understood health in those days: something you work for and earn, like a good job and a living. This is a belief I inherited alongside my genetic predisposition to illness, a frame for understanding the world that took root alongside my skin color, economic status, and religious upbringing. As I grappled with illness and those layers of privilege became visible to me, a new belief emerged alongside them: A person is not to blame for their illness, nor is illness a shameful thing to be hidden.

The process of untangling my health from my self-worth took nearly a decade—long enough for me to learn the full extent of the genetic trip wires waiting to be sprung in my body. At twenty-three, I was grappling with a broken thyroid; by thirty-two, I would accumulate two more autoimmune diseases.

But that’s jumping too far ahead. In those first months after my Hashimoto’s diagnosis, learning the extent of my family history with illness felt like a sudden unraveling of my life’s narrative. So many of us were sick; so many of us took medicine; my grandma’s own thyroid had been irradiated. When I went home for Christmas, I spoke to my aunts about starting levothyroxine, and they shared a few words on their symptoms and diagnoses. My uncle offered a quick consolation—“Not you too!”

That was how I understood health in those days: something you work for and earn, like a good job and a living.

But none of them had any wisdom on how to make the invisible feel real. Maybe it was a generational difference, or that they’d been diagnosed later in life, when our culture suggests it’s the “proper time” to get sick. They all seemed more at ease with their diagnoses; I still couldn’t make sense of what it meant. I felt as if I’d been betrayed by the very immune system that was supposed to protect me.

Back in New York, where I knew no one but my classmates, I pretended nothing was wrong. Even as my symptoms continued to swing on a pendulum, my own doctor downplayed the severity. I switched from one endocrinologist to another, but they all repeated the same message: “It’s not so bad. Have you tried seeing a therapist?” General practitioners commented that I was “too young to be so sick.” People told me I was looking better, though I was feeling worse. And because I was ashamed—because I thought I was exaggerating—I worked just as hard to downplay the illness publicly as I did to manage it privately.

Would I have seen through those lies sooner if my illness were visible? If a goiter grew from my neck? I was grateful for passing as healthy, for largely avoiding the stigma of illness. And yet I resented the charade I’d agreed to participate in, the feeling that to be sick was to have failed a moral obligation to care for myself—and that, even with all my symptoms, the sickness itself was still questionable.

*

I’d stopped looking for reflections of my experience in other people when I discovered Artemisia Gentileschi.

The first painting of hers that I saw was Judith and Her Maidservant. It’s lush and dramatic, depicting a charged moment in the aftermath of action. Two women, a sword, a man’s head in a basket. At the center of the frame is Judith, the blade of a sword resting on her shoulder and disappearing into the dark background. The light illuminates her fierce profile. She does not look at the dead man’s head with its gray skin and closed eyes, nestled in bloody cloth at the bottom of the frame.

I discovered this painting during the period when I was learning more about goiters. As I went deeper into my research, I learned that modern scholars point to something beyond the reference to the Old Testament story of Judith killing Holofernes. Look at Judith’s neck, they say, its curves and thickness. Isn’t it obvious, that swelling where neck meets clavicle? This seventeenth-century masterpiece is a work of realism. Judith’s swollen throat is no artistic exaggeration. It’s a goiter. A goiter, scholars say, that the artist herself possessed.

As well as discussions of Artemisia Gentileschi’s artistic talent, scholars often mention the story of her rape. One of her father’s artist friends assaulted her when she was only a teenager. During the trial against her rapist, Gentileschi was tortured to test the accuracy of her testimony.

Gentileschi’s art hangs in museums around the world. Her work often portrays powerful women, distilling feminine defiance into vivid oil scenes. Judith is Artemisia’s avatar, a reverse reincarnation of the artist’s triumph over a terrible ordeal and the failure of the public to believe her.

I have heard, so many times, of women and their work reduced to a story of abuse and its aftermath. I have seen movies and paintings, read stories, heard songs that whip women between impotence and vengeance.

But I have rarely seen a woman leave the imperfection of her body on a work of art. I look to Judith’s neck, and I wonder if its thickness gave Artemisia a little jolt of satisfaction. Even if goiters were far more common in Artemisia’s era than they are today, I still imagine her pleasure in bestowing her heroines with this mark, a personal detail that didn’t hinge on one of the worst experiences of her life.

For Artemisia and me, our wrongness is wrapped around the esophagus like a clenching fist. But my neck is long, slim, unremarkable. I’ve never seen a reflection of its abnormality in any media, because there’s nothing there to see. I can’t identify others like me from a simple glance. We look only like ourselves, and like everyone else.

Yet knowing Artemisia’s story, and seeing the way she inserted herself into epic portraits, offers a model of acceptance. The sense that I could’ve kept myself from getting sick—that I could be doing more to heal, or that this illness was my fault and should therefore be hidden—receded when I considered her painting.

It’s unlikely that my disease will ever cause a goiter. But when I think of Artemisia and her heroines, I’m reminded that I exist in an imperfect form. I am a reflection of millions of others who have been dismissed but have still found ways to be seen when their incorrigible thyroids misbehave.

• 0