In 1969, Joni Mitchell burst into tears. “They walked on the moon,” she said in In Her Own Words, “and I cried.” Mitchell recalls crying at a bulldozer tearing down trees in its path, crying at the site of their sad stumps. But even though Mitchell admitted that she “was a basket case,” she refused medical intervention and medication. Instead, she sought relief in a inward kind of self-examination. In some respect the experience was typical of Mitchell’s adult relationship with medicine—an acknowledgment that something was wrong, but a belief that psychiatric care was unnecessary.
Pain seems to have defined much of Mitchell’s life—from a childhood bout of polio, to severe depression, to a 2010 self-diagnosis of a condition called Morgellons. By Mitchell’s description, Morgellons is a hellish disease—in constant agony, the singer was unable to wear clothes, to leave her home, to sleep, to eat, to maintain friendships. Morgellons “was eating me alive,” Mitchell said, “sucking the juices out.”
And while Mitchell’s pain is undoubtedly real, the singer, who was hospitalized last month after being found unconscious in her home, does not have Morgellons. No one has ever had Morgellons.
The children of Languedoc, France were born into suffering. They itched uncontrollably, had epileptic fits. They spent their childhoods screaming until their voices went hoarse. Unable to sleep, they would, according to a seventeenth-century observer, “pass rapidly into wasting and extreme emaciation.”
Their mothers tried ease their pain by rubbing their backs and coating their skin with honey and new milk. Eventually, the mothers noticed “coarse hairs” emerging from their children’s skin. They would grab “little Pincers as women use to pull the haire from off their eyebrows,” and pull the offending coarse hairs from their children’s bodies one by one. The extraction was the closest they had to a cure; the mothers would ritualistically repeat the process over and over again until the children stopped crying and stopped convulsing, until hairs stopped sprouting from racked little bodies.
As early as the fourteenth century, physicians and men of science had visited the region to witness the painfully diseased bodies. They left detailing the horrifying screams of infants, the quiet rituals of their mothers, and the detrimental effects the inexplicable coarse hairs had on the well-being of an entire community’s progeny. One of the many observers was British physician Sir Thomas Browne, who waited out a war and an outbreak of the plague to visit the region around 1630. Forty years later, Browne would recall in a letter:
Hairs which have most amused me have not been in the face or head, but on the Back, and not in Men but Children, as I long observed in the endemial Distemper of the little Children in Languedock, called the Morgellons, wherein they critically break out with harsh Hairs on their Backs, which take off the unquiet symptoms of the Disease, and delivers them from Coughs and Convulsions.
Browne’s description of the children of Languedoc was forgotten for centuries. He was, after all, a minor observer; his description of the disease as “Morgellons” was a bastardization of what more renowned physicians called “Masclous” or “Masquelons.”
But then, in 2002, a suburban Pennsylvania mother revived Browne’s name when searching for a cure for her own child’s affliction. Mary Leitao’s two-year-old son had broken out in a rash, followed by lesions over his entire body. She took him to a doctor, an infectious disease specialist, who diagnosed the boy with a rare form of scabies and prescribed an anti-fungal cream. Like the mothers centuries before her in Languedoc, Leitao massaged her son’s arms and covered them with cream. And, just like the mothers in Languedoc, she watched as something resembling coarse hair sprang from her son’s skin. His illness worsened. The doctor had no answer for her; other doctors accused her of sickening the child on purpose.
Determined to prove the reality of her son’s now-unknown disease, Leitao gathered and saved the colorful fibers springing from her son’s body. She examined them under a toy microscope and brought them to doctors, demanded answers and relief. But doctors had no answers other than a possible diagnosis that Leitao herself had Munchausen by proxy—the strange and ill-defined phenomenon of medical abuse by a caregiver who wishes their child to appear sick.
Leitao, displeased and disturbed, began researching her son’s symptoms. Soon, she happened upon Browne’s seventeenth-century letter. She matched the symptoms described by Browne to the disease devouring her toddler’s body, and named her son’s disease Morgellons.
But Leitao’s son did not have Morgellons and neither did the children of Languedoc.
It was discovered relatively soon after Browne’s letter that the “coarse hairs” growing from the backs and bodies of Languedoc’s children were likely the bristled legs of the sarcoptes scabiei, or itch mites. But Morgellons became a word before Giovanni Cosimo Bonomo discovered the scabies mite, and before history recorded scabies as one of the first diseases with a known cause.
And a known cause was all Leitao was looking for. A definitive source of her son’s constant itching would, she believed, lead to a course of action that would end his pain. Without answers from doctors, Leitao did what nearly any twenty-first century mother would do: She turned to the internet. In 2002, she founded the Morgellons Research Foundation, an online forum and chat room that became a virtual meeting site for thousands of people whose symptoms mimicked her son’s.
There self-identified Morgellons sufferers shared their symptoms and exchanged homemade remedies to alleviate their pain. They also obsessively documented their symptoms: the forum contains pages upon pages of photographs of lesions across scabbed and bloodied faces, arms, and back; photographs of sufferers pulling fibers from their skin; photographs of bundles of saved fibers stored for researchers and doctors to study. The photographs serve as something of a testimony, both a rite of passage into a cloistered group, but also as proof that their pain is material. “Something becomes real,” Susan Sontag wrote, “when it is photographed.”
It was through the MRF website—and the many sites it spawned—that Morgellons patients decided to launch a letter-writing campaign. They flooded the mailboxes and inboxes of nearly every member of Congress, with a persuasive case: thousands of Americans, a disproportionate number of them women, recounted their excruciating, strange pain. Their reality, they said, had been dismissed by physicians who told them there was either nothing physically wrong, or that the source of their pain was common—scabies or some other skin infection.
Disease has always had a hierarchy. To suffer from a rare disorder that has been definitively traced to a biological origin is preferable to being diagnosed with a psychiatric disorder. One patient suffers heroically, the other is simply insane. That’s likely why Leitao didn’t just want Morgellons recognized as a disease, but rather a disease with a biological origin—a disease like Lyme’s Disease caused by an infectious agent.
The Morgellons letter writing campaign was successful. It hadn’t been that long since other differential pain syndromes had been recognized after a path that paralleled that of Morgellons. In 1990, the American College of Rheumatology wrote the first set of guidelines to help diagnosis fibromyalgia, a syndrome that, until a few years prior, had been dismissed as an undiagnosed psychiatric disorder, a modern-day form of hysteria manufactured by the disparate number of women who suffered from it.
Recent decades have shown an incredible rise of illness without obvious cause. More than 10 million Americans had been—and continue to be—diagnosed with syndromes with no medically known origin, like chronic fatigue syndrome, irritable bowel syndrome, and post-polio syndrome. These syndromes have all challenged what researchers know about physical pain, both its origins and its relationship to mind and body. In these diagnoses is a persistent reminder that pain is often perception that has to be communicated in order to made real—and that the language of pain is fragmentary, abstract, often not up to the task. Even disorders that are widely thought to be psychological in origin—multiple chemical sensitivity, premenstrual dysphoria—can have devastatingly painful effects.
Perhaps that’s what was running through Dick Durbin (D-IL) and Dianne Feinstein’s (D-CA) minds when, in 2005, they asked the Centers for Disease Control to formally investigate Morgellons. That, and perhaps also the fact that the vast majority of the 4,000 Morgellons sufferers were middle-aged white women who lived in California.
Pain has always been the province of women. For a seemingly endless number of possibilities, women report pain in substantially higher numbers than men. Women feel pain more intensely and experience the effects of pain differently. Language, too fails women’s experiences of pain. The oft-cited study, “ The Girl Who Cried Pain” found that women “describe their pain by giving more contextual information, such as impact on personal relationships and child-care duties.” “Men,” the study notes, “are more likely to wait to attend to pain until it threatens to interfere with their work duties.” It is in that significant difference that doctors often presume women’s pain to be psychological, rather than physical, in nature.
Study after study confirms that women’s pain is rarely taken seriously, history has coded pain as a psychological rather than a physical problem. For centuries women’s pain was dismissed as a fundamental flaw in their biology, the result of a failing delicate nature. Packed off to dingy asylums across the United States and Europe, women in pain were labelled hysterical. And hysteria itself was coded beyond gender—to be nervous was to be frail, to be over civilized, to be affected by modernity. It was a language of pain that was historically denied to women of color. History holds that white women were frail and delicate, women of color were hardy and fertile. It’s no surprise then that the vast majority of Morgellons suffers were white women like Joni Mitchell.
The CDC began to research the disease in 2006. They took samples of skin and blood, and interviewed over a hundred of those willing to work with the government. The process of testing and evaluating is slow, and Leitao became more and more desperate for answers. By 2006 she was claiming that her two older children had Morgellons too.
Previous to this, the Mayo Clinic had launched their own investigation. From 2001 to 2007, Mayo examined individuals and conducted clinical research. In 2011, the researchers published their study in the Archives of Dermatology. They had found no evidence that Morgellons is biological in origin. They reaffirmed the established view: that the vast majority of Morgellons patients have dermatitis combined with delusional parasitosis, a psychotic disorder first described in 1937—an idée fixe characterized by the belief that the body is infested with insects. The disorder often results in formication, the medical term for the surely terrifying sensation that bugs are constantly crawling up and down your body.
The CDC released their initial findings in 2012. Like the Mayo Clinic, they could find no infectious agent or environmental link. As for the colorful, “coarse hairs” pulled from arms and legs, both Mayo and the CDC confirmed that the threads were more often than not cotton or other materials used to make clothing. Some were also nerve fibers: in extreme cases of delusional parasitosis, patients will dig practically to the bone in a futile effort to stop the pain.
After the CDC’s findings, Leitao donated all of the research and archives of the Morgellons Research Foundation to Oklahoma State University. There, a single researcher, Dr. Randy Wymore, continues to search for a biological origin. He denies, like many sufferers, that the fibers pulled from skin were organic. He denies also that Morgellons is, in actuality, a psychiatric disorder best treated with anti-psychotic medication.
Morgellons is one of the many manufactured disorders that would have disappeared into a footnote of a historian’s book on mass hysteria or an example of the internet’s particular brand of folie à plusieurs. But one of the self-identified suffers was Mitchell. In April 2010, the folk legend described her symptoms to the Los Angeles Times:
I have this weird, incurable disease that seems like it’s from outer space, but my health’s the best it’s been in a while. Two nights ago, I went out for the first time since Dec. 23: I don’t look so bad under incandescent light, but I look scary under daylight. Garbo and Dietrich hid away just because people became so upset watching them age, but this is worse. Fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm: they cannot be forensically identified as animal, vegetable or mineral. Morgellons is a slow, unpredictable killer — a terrorist disease: it will blow up one of your organs, leaving you in bed for a year. But I have a tremendous will to live: I’ve been through another pandemic — I’m a polio survivor, so I know how conservative the medical body can be. In America, the Morgellons is always diagnosed as “delusion of parasites,” and they send you to a psychiatrist. I’m actually trying to get out of the music business to battle for Morgellons sufferers to receive the credibility that’s owed to them.
Mitchell’s words are telling: she speaks the familiar language of a person who wants their pain to be recognized, manifesting a deep distrust of psychiatry and the American medical establishment. Mitchell speaks with certainty about what she believes to be true, yet her truth is cyclical and contradictory in nature: she survived polio despite a “conservative… medical body,” the same medical body that eradicated polio in the United States in 1979. She is certain only of the sureness of her pain.
“To have great pain is to have certainty,” Elaine Scarry wrote in The Body in Pain, “to hear that another person is in pain is to have doubt. The doubt of the other person… amplifies the suffering of those already in pain.” If pain has no physical origin, if there is no external sign—no gashes, open wounds, broken bones—then there is only the expression of pain left. That the Morgellons community wants its pain to be more clearly manifest—wants its pain to simply be a reliable narrator—might be one of the most fundamentally human of wants. The fact that their symptoms are bound to psychiatric disorder does not lessen their pain but enhances it.
It’s easy to dismiss pain, to become as accustomed to cries of agony as the mothers in Languedoc. When faced with an idea like Morgellons, it’s particularly easy to focus on its paranoid, conspiratorial offshoot—to mock those who whisper about government control and chemtrails, or who those spend hours cropping photographs of Amy Winehouse trying to convince others that the lesions that bloomed from her face and arms in the final years of her life were the result of Morgellons; that her drug addiction was a fictional cover for the truth.
But within that conspiratorial mess are those whose pain is very real, who believe that their body has been overtaken with insects, people who spend their days and nights scratching until their backs and arms bleed. They try to communicate this pain obsessively; they believe in its validity. Those still looking for an origin point in Morgellons will disagree. And that—the space between the real and the valid—is the gap that our language for pain can’t manage. “English, which can express the thoughts of Hamlet and the tragedy of Lear,” Virginia Woolf once wrote, “has no words for the shiver or the headache… Let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.”
Illustration by Tara Jacoby.
Contact the author at firstname.lastname@example.org.